Sydney Salem Golding Fund Blog

Rare Disease Day 2010

2010-02-28T06:13:00.005-06:00

On the last day of February each year, the rare disease community comes together to raise awareness and celebrate its shared strength. NORD (National Organization for Rare Disorders) and its partner organizations proudly sponsor U.S. Rare Disease Day.

Some facts from NORD about rare diseases:

• A rare or "orphan" disease affects fewer than 200,000 people in the United States.

• There are more than 6,000 rare diseases.

• Approximately 30 million Americans (about 10%) are affected by a rare disease.

We all come together on Rare Disease Day to:

• Raise awareness about rare disease

• Champion research efforts toward development of new treatments

• Support provision of resources for patients and families

Together we can make a difference.

Alone we are rare. Together we are strong.

Take action Now:

Write Your Governor

http://www.rarediseaseday.us/rdd/take-action/write-your-governor/

Become a Partner

http://rarediseaseday.us/rdd/take-action/become-a-partner/

HLH Research Grants

2010-02-23T16:56:00.007-06:00

The National Heart Lung and Blood Institute (NHLBI) has awarded 2 supplemental awards to an existing grant for HLH research originally awarded in 2007 to Dr. Michael Jordan at Cincinnati Children's Hospital. With the addition of these supplements, Dr. Jordan will be receiving approximately $500,000 over the next two years for his research.

This research is focused on developing an animal model of HLH to test the hypothesis that perforin-dependant cytotoxic killing of selected dendritic cells by CD8+ T cells limits the entry and/or persistence of antigen in DC populations, and thereby limits immune activation.

To test this hypothesis, the research will pursue the following specific aims:

1.) Define how antigen handling and presentation differ between WT and prf DC subsets after LCMV infection.

2.) Determine whether CD8+ T cells are the principle cell type that suppresses DC stimulatory function via a perforin-dependant mechanism.

This project will lead to better understanding of how cytotoxic function regulates the immune response and lead to improved therapies for patients with HLH and perhaps many other immunopathologic disorders.

You can read more about the grants and the research at the following link:

http://projectreporter.nih.gov/reporter_searchresults.cfm?&new=1&icde=2287115&loc=2&CFID=22616993&CFTOKEN=82756898

Invitation to Participate in TCCC Histiocytosis Research Program

2010-02-23T16:02:00.000-06:00

The Histio Heroes Research Fund is very proud and excited to announce an opportunity for histiocytosis patients to play a direct and important role in advancing the ground-breaking research that Dr. Ken McClain and Dr. Carl Allen are performing through the Histiocytosis Research Program at Texas Children's Cancer Center.

What does this research involve?

The TCCC Histiocytosis Research Program is dedicated to studying Histiocytic Diseases in order to identify the causes and discover cures. If you or your child are undergoing procedures (surgical biopsy, blood draw, lumbar puncture) for clinical purposes related to the diagnosis or treatment of histiocytosis, you are invited to participate in Histiocytosis Research Program.

This research requires tissue samples from patients with Histiocytic Diseases, including Langerhans Cell Histiocytosis (also called Eosinophilic Granuloma), Juvenile Xanthogranuloma, Rosai-Dorfman Disease, Erdheim-Chester Disease, Hemophagocytic Lymphohistiocytosis, and Malignant Histiocytosis. These tissue samples provide vital information that will assist the Histiocytosis Research Program team in understanding the basic causes of histiocytosis, which hopefully will lead to more effective treatments.

What is needed for this research?

Surgical biopsies. The current research is focusing on an effort to isolate pure populations of cells fresh or frozen biopsy specimens to discover which specific genes are causing Langerhans Cell Histiocytosis and related diseases.

Blood samples. White blood cells can be isolated and analyzed in order to determine which circulating cells and genes contribute to Histiocytic Diseases. The plasma fluid in blood can also be analyzed to determine which proteins are important in diagnosing and treating Histiocytic Diseases.

Cerebrospinal fluid. CSF is the fluid that surrounds the brain and spinal cord. The Histiocytosis Research Program is studying proteins that are involved in Histiocytosis-related nerve problems.

Medical information. Medical details associated with the biology samples will help determine the clinical significance the genes, proteins and cells identified in the Histiocytosis research studies.

How can I participate in this research?

If you are interested in participating in the Histiocytosis Research Program, you are invited to contact Dr. McClain or Dr. Allen so that they can send you information and a consent form for this study that is approved by the Institutional Review Board for Baylor College of Medicine and Affiliated Institutions.

Dr. McClain, Dr. Allen or a staff member will then contact you by phone to discuss the consent form. If you are interested in participating after that conversation, you can then sign and return the consent form by FAX, mail, e-mail or FedEx (a prepaid FedEx airbill can be provided).

After answering your questions and receiving a signed consent form, the Histiocytosis Research Program team can discuss specific instructions for collection and shipping of tissue samples with you and your doctors.

Please contact us if you are interested or if you and/or your physicians have other questions about the Histiocytosis Research Program.

Kenneth McClain M.D., Ph.D. (klmcclai@txccc.org)

(832) 822-4208

Carl Allen M.D., Ph.D. (ceallen@txccc.org)

(832) 824-4312

Mailing address:

TXCCC Histiocytosis Lab

Texas Children's Hospital/Feigin Center

Rm C1070.01L

1102 Bates Street

Houston, Texas 77030

Histio Heroes In The News

2010-02-15T05:33:00.007-06:00

We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis:

Logan Craig

Seward Youth Football Players Huddle To Help One Of Their Own

Eric Hauser
Sister Gives Her Brother A Miracle

Sydney Martin

Make-A-Wish Makes Dream Bedroom For 12 Year Old

Natalie Matheson

Winston Hills Shoppers To Help Kids With Cancer

Zali

Central Coast Toddler Poster Girl For Bandaged Bear Day

Click on the story titles to read more about these brave adults and children. You can read more other histio warriors, awareness/fundraising events and other ways to help in the fight against histiocytosis by becoming a fan of the Histio Heroes Research Fund.

Histio In The Headlines

2010-02-07T09:32:00.005-06:00

We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis:

William Black

Donor Appeal By Fife Man Given Second Chance At Life

Myles Clapsadl
Cooke Man To Hike Everest For Ill Teen

Maya Gordon
Ogdensburg Girl Fights Rare Illness

Austin Hodge
Make-A-Wish Treats Valley Family To Super Bowl Trip

Jason Radunz
Radunz Benefit Saturday, Feb. 13

Click on the story titles to read more about these brave adults and children. You can find more information about histiocytosis on the Histiocytosis Association of America website.

New HHRF Logo

2010-01-31T18:30:00.001-06:00

New HHRF Video

2010-01-30T13:10:00.007-06:00

We wanted to share the new video (with awesome original music) that Bridget Colby has prepared for the Histio Heroes Research Fund (HHRF).

Please check out the video and contact us to learn how YOU help HHRF in supporting ground-breaking histiocytosis research that Dr. Ken McClain and Dr. Carl Allen are performing through the Texas Children's Cancer Center Histiocytosis Program.

Histio Heroes Research Fund -- http://www.cause.com/histioheroes

TCCC Histiocytosis Program -- http://www.txccc.org/content.cfm?content_id=928

liam's lighthouse foundation on TODAY Show

2010-01-30T12:13:00.002-06:00

Check out liam's lighthouse foundation supporters in the crowd at the Today show and talking to Al Roker about Hemophagocytic Lymphohistiocytosis (HLH). You can learn more about HLH and the liam's lighthouse foundation on their website -- http://liamslighthousefoundation.com

Visit msnbc.com for breaking news, world news, and news about the economy

Histio Heroes and Angels In the News

2010-01-30T11:45:00.004-06:00

We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis:

Mina Chamberlin
Race To Help Find Bone Marrow Match

Richard Conaboy
Basketball Season Is Special For Richard Conaboy

Bill Holmes
Innovative Approach To Brain Surgery

Nick Kappenman
Comfort In A Cape

Lucas Mallory
Baby Battling Rare Immune System Illness

We also wanted to take a moment to remember and recognize several brave warriors who recently lost their courageous battles against histiocytosis:

Aamari Braijon Culbreath (20 months old -- LCH)

Taylor Russell (5 years old -- HLH)

Jake Price (20 years old -- HLH)

Colin Kidd (11 years old -- HLH)

Raven Phoenix Watson (4 years old -- HLH)

Alycia Aubin (17 years old -- HLH)

Click on the story titles to read more about these brave children. Learn how you can help in the fight against histiocytosis by becoming a fan of the Histio Heroes Research Fund.

Questions & Answers -- Histio Heroes Research Fund

2010-01-30T11:40:00.000-06:00

We have received questions from a number of histio parents about the Histio Heroes Research Fund (HHRF) and wanted share our response to a recent set of questions which hopefully will provide more information about HHRF, its structure, its goal and future plans.

What is the history behind this fund? What I mean is, how did it start or what was the impetus behind it?

HHRF has been created by a group of histio families from across the country to help raise funds that will support Dr. Ken McClain in pursuing important and ground-breaking research into histiocytic disorders through the Histiocytosis Research Program at Texas Children's Cancer Center.

This research has determined that Langerhans Cell Histiocytosis (LCH) is not caused by a skin cell (Langerhans Cell) as commonly thought and instead more likely results from a circulating white blood cell (myeloid dendritic cell). This discovery holds substantial promise for identifying the genes that cause LCH and developing new treatment strategies targeting these genes.

The initial grant for the research that HHRF is now supporting at Texas Children's came from a grant that Dr. McClain and Dr. Allen received from the HAA Research Program. The research funding from this program is awarded through 1-2 year grants for which individual researchers must apply and which are limited to $50,000 per year. Dr. McClain has stated that he requires additional funding to allow progress to continue on his research. HHRF hopes to solve these problems by being able to direct money to this research without the time or dollar amount limitations.

Is it governed by a Board of Directors?

HHRF is a restricted and designated fund at Texas Children's Cancer Center (TCCC) which means that funds can only be distributed to the TCCC Histiocytosis Program and, in particular, the research portion of that program under the supervision of Dr. McClain and Dr. Allen. Future plans include HHRF being established as an independent non-profit which will be able to fund worthwhile research at other institutions. However, the current focus is the research being preformed by Dr. McClain and Dr. Allen through the TCCC Histiocytosis Research Program

HHRF has established a Parental Advisory Board compromised of histio parents with experience in fundraising and operating non-profits to act as a liason between histio families and the TCCC Histiocytosis Program in organizing fundraising events, processing donations and communicating information about distributions from HHRF to the TCCC Histiocytosis Research Program.

The HHRF Parental Advisory Board also is charged with ensuring that funding requests from and distributions to the TCCC Histiocytosis Research Program meet with areas of need identified in the business plan and fall within the parameters set forth in the annual program budget. Information about funding requests and distributions from HHRF to the TCCC Histiocytosis Research Program will be communicated to donors and supporters on a regular basis.

How does it award grants and what are the granting criteria that must be met, such as does it pay physician salaries, cover overhead costs, etc.?

Dr. McClain and Dr. Allen have developed a five year plan for accelerating the progress of LCH research, which includes a business plan (setting forth major research goals) and proposed operating budget (FY10-FY15) for the TCCC Histiocytosis Research Program that identifies projected operating expenses, including laboratory operating expenses. HHRF will focus initially on raising money to cover these expenses on an annual basis ($150K - $200K) in keeping with its goal of 100% of moneys raised or donated being allocated to research efforts. Funding being allocated to cover personnel expenses (including recruitment of additional researchers) will only occur after annual laboratory operating expenses have been fully satisfied.

Does the board that governs the fund also hold the grantees accountable?

HHRF will ensure financial accountability through regularly audited financials detailing how the money distributed from HHRF to to TCCC Histiocytosis Research Program is being utilized with a breakdown by category of expenditure. Funding also will be conditioned on activity being documented that shows progress toward identified research goals.

How is the research reported and shared with others doing research into histiocytic disorders?

HHRF has made clear that status reports on the research being funded will be required on an annual basis with the idea that one or more articles detailing research results will be published in peer-reviewed journals and presented at medical conferences.

Please feel free to contact us if you have any other questions or want more info about how to become involved with the Histio Heroes Research Fund (HHRF).

The HHRF Parental Advisory Board

Betsi Burns

Bridget & Patrick Colby

Mike Golding

Toby & Billi Jo Hausman

Darci Moon

Donna & Don Johnson

Pam & Tom Sanger

Melissa & Jeff Thompson

Colleen McPeek & Ron Bechtold

Advice From HLH/BMT Parents

2010-01-30T11:05:00.001-06:00

Things We Have Learned

1. Don’t get caught up in hospital rankings. They are businesses and they know that good a ranking helps their “sales”. Countless hospital employees have told us that if the ranking is something that is important to the hospital they will play “the game” and do the things that will help them get a good ranking. They are then able to use that ranking as an advertising tool to attract more customers. If you are interested in the ranking, then look at what the criteria is for the ranking-you will see very little of it will impact actual patient care.

2. If you or a loved one gets diagnosed with a rare or life threatening illness go where the experts are located for that specific illness. The doctors that have dedicated their life to that disease, you will then have access to the latest research, drugs and treatment. By the time it is published for everyone else in the medical community, it might be too late.

3. EXPERIENCE-EXPERIENCE-EXPERIENCE. Albert Einstein said it best, “The only source of knowledge is experience.” Cincinnati Children’s Hospital is the biggest pediatric bone marrow unit in the United States. Last year they did 108 transplants! There are currently 7 children in-patient on the BMT floor with us right now who have HLH. Just last year, one of the doctors here created HLH in a mouse and was the first doctor in the world to do so. The reality is that the more you do something the more you learn. Volume truly equals success.

4. You need to feel that you are part of a team. The doctors need to be visible, accessible and present. Not just some of the time but all the time. You need to be heard and have your thoughts and opinions taken seriously.

5. Disease does not take a break and neither should your hospital. All tests, specialists and medicines need to be available all the time and not just Monday through Friday.

6. Don’t be afraid to speak up. Oh how we wish that someone had stepped forward early in the process with Andrew and had pushed us to go check out Cincinnati. The chemo protocol might be the same from one hospital to the next but it is the knowledge that is gained during the transplant process every day that truly matters.

7. Listen, ask questions, take notes and keep records. It is your duty and responsibility to be your child’s number one advocate. No one loves your child as much as you do and therefore you must never rest or become complacent. If you feel things are not going right you must climb the ladder until you reach the person or persons to make sure you are heard. Most importantly, if you are unhappy with your doctor or hospital, then leave. It is a matter of life and death.

Histio Heroes Research Fund -- Research Goals

2010-01-30T10:56:00.004-06:00

What is the goal of the research that Histio Heroes Research Fund is supporting?

The overall goal of the Histiocytosis Research Program at Texas Children’s Cancer Center is to comprehensively identify essential genes critical to the growth and development of Langerhans Cell Histiocytosis (LCH). Identifying these genes will lead to an understanding of the key proteins that regulate cell function and the pathways they control. The knowledge gained will lead to a complete understanding of how LCH lesions are formed and how they progress. This complete understanding will ultimately lead to better treatments and a cure for this disease.

What types of research activities will the Histio Heroes Research Fund be supporting over the next five years?

The Histiocytosis Research Program at Texas Children's Cancer Center has four areas of focus:

Comprehensive Analysis of Cell-Specific Gene Expression in LCH Tumors

This project is the core of our research program. It is based on the idea that we cannot improve treatment of patients with LCH until we understand the fundamental nature of the cells that comprise LCH lesions. These lesions can arise in almost any organ system, and their severity can range from a rash to systemic disease that obstinately resists chemotherapy.

Data from our cell-specific microarray experiments do not support the current concept that LCH arises from clonal proliferation of activated-immature Langerhans’ cells (LCs) from the skin. We propose an alternative hypothesis that LCH tumors arise from pathologic myeloid dendritic cells that affect lymphocyte activation, migration and accumulation.

Developing Unique Models for Preclinical Drug Screening

A significant obstacle in developing novel therapies for LCH has been the lack of a preclinical model that accurately mimics LCH in humans to predict clinical response. The large number of samples acquired by our laboratory now makes it possible to attempt development of cell culture and animal models that may be used to study disease progression and test therapies.

Developing a Comprehensive Genomic Database

We also plan to develop a comprehensive genomic database for LCH, JXG, RDD, ECD, and malignant histiocytosis that will be used by Texas Children’s investigators and also by collaborators from various institutions in the United States and around the world. This genomic database will help identify novel therapeutic targets based on the genetic changes unique to histiocytic diseases.

Implementing High Throughput Therapeutic Drug Validation Strategies

Once we have identified potential drug targets using the gene profiling studies described above, we will perform high-throughput studies to validate these possible targets. For this crucial step, we have the special advantage of being able to use highly sophisticated technologies now available to us through the recent establishment of the John S. Dunn Gulf Coast Consortium for Chemical Genomics. Using this state-of-the-art facility, we propose to use siRNA approaches to independently validate the function of the candidate genes and pathways by either targeted inactivation or by using whole genome siRNA libraries.

We will also use the chemical genomics approach as part of the target validation process. The compounds identified at this stage could be used both as chemical probes to further dissect the pathways and as potential lead compounds in the subsequent drug development phase of the project.

Why should you get involved with HHRF and support this research?

Establishment of a focused, intensive LCH research program will improve our understanding of the biology of LCH and other histiocytic diseases and facilitate identification of new molecular targets. Most importantly, this unique program—if funded and executed as planned—will lead to more effective treatments and potentially a cure for Langerhans’ Cell Histiocytosis.

You can learn more about this research and how to become involved by going to the Histio Heroes Research Fund page on Facebook --

http://apps.facebook.com/causes/424806
Please feel free to post any comments or questions about HHRF or this research.

The HHRF Parental Advisory Board

Betsi Burns
Bridget & Patrick Colby
Mike Golding
Toby & Billi Jo Hausman
Darci Moon
Donna & Don Johnson
Pam & Tom Sanger
Melissa & Jeff Thompson

Colleen McPeek & Ron Bechtold

In Memoriam and Motivation

2010-01-30T10:54:00.000-06:00

We are thankful for many things during this past year, but hope that everyone will take a moment to share a thought or say a prayer for the brave histio warriors who ended their courageous struggles in 2009.

Colin Kidd (11 years old -- HLH)

Raven Phoenix Watson (4 years old -- HLH)

Alycia Aubin (17 years old -- HLH)

Tanner Bertauche (4 years old -- JXG)

Elijah Cullison (10 years old -- HLH)

Matt Cwiertny (24 Years Old -- HLH)

Benjamin Levie (7 Years Old -- HLH)

Jeffrey G. Smith (13 Years Old -- HLH)

Irelyn Rose Fredock (16 Months Old -- LCH)

Liam Schulze (20 months old -- HLH)

Andrew Akin (2 years old -- HLH)

Matthew Gouwens (8 months old -- HLH)

Tim Selinske (50 years old -- LCH)

Abigail Buckner (2 1/2 years old -- HLH)

Jared Scott Eggemeyer (17 years old -- HLH)

Jacob Kelly Ryan (10 years old -- HLH)

Karleigh Marie Hobart (10 months old -- HLH)

Marion Isabella Sumner (1 month old -- LCH)

Zachary Malik Tyler (13 years old -- LCH)

Aiden Brian Willis (3 years old -- HLH)

Meredith Herrin (9 years old -- HLH)

Kristina Brittany Incze (17 years old -- LCH)

Matthew Gonzalez (17 years old -- HLH)

Derrick Drexler (21 years old -- HLH)

The grace and courage with which these warriors fought their battles should remind and motivate us to keep fighting to raise awareness about and fund research to find better treatments for histiocytosis.

TCCC Histiocytosis Program

2010-01-04T17:23:00.000-06:00

This document provides basic information about the clinical and research accomplishments of the Histiocytosis Program at Texas Children's Cancer Center, the research breakthroughs regarding Langerhans Cell Histiocytosis and the research goals over the next five years that will be supported through the Histio Heroes Research Fund.

Histio Heroes Research Fund -- Press Release and Mission Statement

2010-01-04T17:20:00.000-06:00

The Histio Heroes Research Fund (HHRF) has been established to contribute to the goal of curing histiocytosis. We share this goal with the Histiocytosis Association of America (HAA) which has and will continue to be the primary resource for advocacy, education and outreach for histio families. Over the past two decades and with help from countless histio families, the HAA has accomplished a great deal through its support of research programs and treatment protocols pursued by researchers and physicians, including Dr. Ken McClain.

It is our belief, as families dealing with histiocytosis, that the more directions taken to understanding histiocytosis the faster answers may come. HHRF is intended to accelerate and advance the progress of histiocytosis research by raising money from new events and new sources that can be channeled directly to research that is showing promise and that may require more significant funding than is currently available from traditional funding sources.

It is in that spirit we have created HHRF to support the Histiocytosis Program at the Texas Children's Cancer Center and, in particular, the research that Dr. McClain and Dr. Carl Allen are performing. This research has determined that Langerhans Cell Histiocytosis (LCH) is not caused by a skin cell (Langerhans Cell) as commonly thought and instead more likely results from a circulating white blood cell (myeloid dendritic cell). This discovery holds substantial promise for identifying the genes that cause LCH and developing new treatment strategies targeting these genes.

Click HERE to learn more about the TCCC Histiocytosis Program, its research and its goals over the next five years.

HHRF believes that this research deserves the financial support which will enable continued progress to be made towards better understanding and treating a disease which has not been well understood. However, this support does not mean that histio families should no longer continue to support the efforts of HAA. In fact, the HHRF Parental Advisory Board is comprised of families who have supported the HAA through organizing regional and national meetings, developing informational and educational videos, and hosting major annual fundraising events, including Histio Heroes 5K and Hike for A Cure.

Please contact one of us if you have questions about HHRF or would like to get involved.

We all understand that research takes time and money and that for any problem there is more than one approach to finding a solutions. We believe that HAA and HHRF can both contribute to faster diagnosis, better treatment and improved understanding of histiocytosis in their own way with the same goal.

That goal is to accelerate us to a cure.

The HHRF Parental Advisory Board

Betsi Burns
Bridget & Patrick Colby
Mike Golding
Toby & Billi Jo Hausman
Darci Moon
Donna & Don Johnson
Pam & Tom Sanger
Melissa & Jeff Thompson
Colleen McPeek & Ron Bechtold

Histio Heroes Research Fund

2010-01-04T17:15:00.000-06:00

We have been dropping hints and asking questions over the past month about how you can become involved in supporting histiocytosis research. We will try to explain this new project and answer some basic questions.

What is this project?

The Histio Heroes Fund has been created by a group of histio families from across the country to help raise funds that will support Dr. Ken McClain in pursuing important and ground-breaking research into histiocytic disorders through the Histiocytosis Research Program at Texas Childrens' Cancer Center.

Why is this project important?

We all have experienced the frustration of seeing our children, siblings, friends or family members fight against histiocytosis -- a disease that has no cure and that receives limited research funding. Many families have been fortunate enough to see or have their physician consult with Dr. McClain who sees more histio patients than anyone in the world and is one of the few physicians performing research into histiocytic disorders.

Dr. McClain has asked for our help in the fight against histiocytosis. His research has reached a point where he believes that more funding for clinical and scientific research will lead to significant developments over the next 5 years in the understanding and treatment of histiocytic disorders. Unfortunately, the sources for that funding are limited which is why he is asking for our help.

What is this project going to do?

The Histio Heroes Fund will accept direct fund raising donations, organize fundraising events across the country to raise research funds and promote awareness about histiocytosis. 100% of monies raised or donated to will be used to fund research.

The Histio Heroes Fund will also inform families about additional ways to support this research which will not require financial donations, including increasing physician awareness about histiocytosis and securing tissue biopsy samples from their hem/onc physicians to send to Dr. McClain for his research. These tissue samples provide vital information that will assist Dr. McClain and his team in understanding the basic causes of histiocytosis which hopefully will lead to more effective treatments

How can you get involved in this project?

Fundraising events will begin in early 2010, including a scotch and wine tasting event being held in a number of cities and a program to help histio while getting your taxes done. We also are working on a number of other events that will be announced in the near future.

We encourage any interested families to share their fundraising ideas or offer to organize their own unique event. The histio community is filled with amazing people who hopefully will be willing to contribute their energy, knowledge and talents to this effort.

You can help now by making a donation (no amount is too small) during the holiday season to The Histio Heroes Research Fund by going to the TXCCC Histiocytosis Program page - http://www.txccc.org/content.cfm?content_id=928.

Click the DONATE link at the bottom of the page which will take you to the on-line donation page. Make sure to include "The Histio Heroes Research Fund" or "TXCCC Histiocytosis Program" in the Purpose of Donation/Comments section.

Have other questions? Want more info? Ready to get involved? Contact us!!!

Histio In The Headlines

2009-12-01T22:46:00.004-06:00

We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis:

Maya Chamberlin
A Brother Requests A Helping Hand For His Little Girl

Isaac Clary
Illness Inspires Boy To Collect Toys For Children In Hospital

Taylor Ehrens
It's Been A Tough Year

Jalaya Farrington
Mom Wants Disney World Escape For Daughter

Tania Haake
Providing Free Camps To Kids Living With Cancer

Jessie Woodford
A Season Of Wishes

Click on the story titles to read more about these brave children. Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

Help With Holiday Cards

2009-12-01T11:33:00.005-06:00

We wanted to provide links for holiday cards that you can purchase which will support several great causes and help to raise awareness along with spreading season's greetings:

Holiday Cards (Alex's Lemonade Stand Foundation)

Connor's House Holiday Cards (Connor's House)

Rainbow Kids Cards (Rainbow Babies & Children's Hospital)

Imagine A Cure Holiday Cards (Histiocytosis Association)

HAPPY HOLIDAYS!!!

Jake Olson: A True Inspiration

2009-12-01T09:41:00.000-06:00

Twelve-year-old USC fan Jake Olson had his left eye removed at age 1 due to retinal blastoma. Over the next decade, Jake faced eight relapses and beat cancer each time. However, when the cancer returned for a ninth time, his right eye did not respond to chemotherapy, radiation or any other treatments. Jake's doctors determined that his right eye would have to be removed, thus sentencing him to a lifetime without sight.

Before he lost his eyesight, Jake wanted to see one more USC game to take that image with him into surgery. Coach Pete Carroll and the USC Trojans responded by granting Jake's final wish before he lost his sight. What started out as tickets to a game has turned into a relationship with the Trojan family that Jake says is helping him endure his battle.

Jake's story was profiled on ESPN College Gameday this past Saturday and is something truly worth watching to make you feel grateful and inspired.

Giving Thanks For Helping Histio Heroes

2009-11-25T07:49:00.007-06:00

We wanted take time to recognize and express our enduring gratitude to Dr. Ken McClain and the Histiocytosis Program at the Texas Children's Cancer Center for really making a difference in the fight against histiocytosis.

The Histiocytosis Program at the Texas Children's Cancer Center, is associated with Texas Children's Hospital, the largest pediatric hospital in the United States, and serves as the pediatric program of The Dan L. Duncan Cancer Center, an NCI-designated cancer center at the Baylor College of Medicine

The Histiocytosis Program Director, Kenneth L. McClain, M.D. Ph.D., is the past president of the Histiocyte Society and has been treating patients with histiocytic disorders for over twenty years. He sees over 100 new LCH and HLH patients per year, and has over 400 active patients in the clinic. Dr. McClain is one of only a few physicians in the world researching a cure for children with histiocytosis.

The Histiocytosis Research Laboratory, through the dramatic increase in the number of patients, has been able to develop and expand clinical trials of innovative therapies and leads the world in research of LCH, HLH, JXG, RDD, and ECD. The clinical experience developed, coupled with the basic research studies involving with rare biopsy and other tissue samples, provides the unique opportunity to establish clinical and biologic correlations that no other center in the world can.

The Histiocytosis Program needs additional support support to expand its ongoing research efforts and to pursue additional state-of-the-art investigations that will lead to discoveries which will expedite development of more effective and innovative therapies for histiocytic disorders.

Please contact Mike Golding or Don Johnson if you are interested in learning more about how you can help Dr. McClain in the fight against histiocytosis.

Histio Heroes And Angels In The News

2009-11-24T07:57:00.005-06:00

We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis and histio angels who continue to inspire others :

Jacob Baltz
Pocahontas Parish Rallying Around 1-Year-Old And His Family

Gavin Shaw
"Superhero" Gavin Inspiration Behind 2 Day Blood Donor Clinic

Enda Walker
X Factor Stars Help Sick Children

Click on the story titles to read more about these brave children. Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

Liam's Lighthouse Foundation Holiday Ornament Fundraiser

2009-11-23T11:31:00.007-06:00

We wanted to share some information from Michelle Schulze about about a great holiday fundraiser being organized to support Liam's Lighthouse Foundation, which has been started in honor of her son Liam who recently lost his courageous battle with Hemophagocytic Lymphohistiocytosis.

I have been working nonstop on Liam’s foundation. I have started the ball rolling with all the necessary paperwork. I haven’t had a chance to get the website off and running yet because I have been diligently working on Liam’s first fundraiser for his foundation. I thought since Christmas was right around the corner, we would start with a small fundraiser.
I have made lighthouse ornaments in honor of Liam’s Lighthouse Foundation. I thought when people would see the lighthouse hanging from their tree this year and every year from now on, they would remember our brave little warrior and how he is still shining even though he is now an angel in Heaven. I have spent many, many hours making them and really have put my heart and soul into them. Nothing would make me happier than to receive requests for these lighthouses, knowing that Liam’s story will be apart of their Christmas tree.
Knowing that people will continue to remember a 20 month old little boy and the number of lessons he has taught us all, brings tears to my eyes. Not only is it a fundraising opportunity for his foundation, but I would feel beyond honored that these lighthouses will be hanging in others’ homes.
The lighthouse ornaments will be sold for $7.00 each and are tax deductible. If you would like an ornament, please send your check payable to:

Liam’s Lighthouse Foundation
5818 Charlois Ct.
Colorado Springs, CO 80922

Rainbow Radiothon

2009-11-23T11:21:00.002-06:00

The WDOK 102.1-FM Rainbow Radiothon was held on November 12 and 13. This year's radiothon raised raised $325,011 to benefit the family and child life programs at Rainbow Babies and Children's Hospital.

In its seventh year, and first with WDOK, the Radiothon has raised a total of $2.5 million in donations. Radiothon celebrates all the kids at Rainbow who are fighting difficult health challenges, as well as the generous people who have supported these children through their donations, time, and passion.

Tanner's Obituary

2009-11-23T10:56:00.003-06:00

We are posting the following obituary that was written by Tanner's father, Alexis Bertauche, and appreciate his family allowing us to share his story.

It is with much sadness that we announce the passing of our son Tanner. Tanner was born on July 8, 2005 at Renown Medical Center and passed into God’s arms November 17, 2009 at Children’s Hospital in Oakland, CA after a long battle with a rare histiocytosis disorder called Juvenile Xanthogranuloma. Our angel on earth is now our angel in heaven. Tanner is survived by his parents Wendy and Alexis, two brothers KJ and Bodie as well as his loving grandparents, uncles and great grandparents.

Tanner lived an inspired life never letting his illness get in the way of his spirit that affected everyone who met our angel. Over the course of his illness Tanner converted many strangers into friends and inspired his doctors and nurses with hope and faith as he fought bravely and without complaints against a disease that has no established treatment protocol. Tanner always found a way to bring a smile to our faces.

Our family would like to thank the Reno community for their generous support over the past year and a half. We also want to thank the doctors, nurses, and social workers at Children’s Hospital Oakland, Renown Medical Center, Saint Mary’s and Lucille Packard’s Children Hospital at Stanford for the exceptional care of Tanner as well their belief in our son.

There will be a celebration of Tanner’s life at Our Lady of the Snows church in Reno on Friday, December 4thstarting with a tribute at 1pm followed by a memorial mass at 2pm with a reception at the parish center following the mass. All are welcome to come celebrate the life of Tanner Bertauche. In lieu of flowers donations can be made to the Tanner Bertauche Medical Fund at any Wells Fargo Bank location. This fund will become the seed for The Tanner’s Moon Foundation to help other families who are fighting histiocytosis.

Histio Heroes In The Headlines

2009-11-17T12:07:00.007-06:00

We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis:

Alex Johnson
Boy Battles Nine In A Million Disease

Brittany Kaufman
Benefit Scheduled For Four Year Old

Miranda Lindenberg
Faculty Member's Child Diagnosed With Rare Blood Disorder

Eduardo Rivera
Response Slow To Help Child

Liam Silva
Over 300 Attend Bone Marrow Drive

We also wanted to take a moment to remember and recognize a couple brave histio warriors who recently lost their courageous battles against histiocytosis:

Tanner Bertauche (4 years old -- JXG)

Elijah Cullison (10 years old -- HLH)

Click on the story titles to read more about these brave children. Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

Mommys Shoes

2009-11-17T12:06:00.000-06:00

The following poem was borrowed from Kathleen Brown-Blake, a histiocytosis mom. This poem is a very sweet way of expressing being a parent of a child with any life altering medical diagnosis. More importantly, it is a gentle reminder that we all have our hardships.

Mommys Shoes.

My mommy is wearing a pair of shoes.
They are ugly shoes.
She says they are uncomfortable shoes.
My Mommy hates her shoes.

Each day she wears them, and each day she wishes she had another pair.
Some days her shoes hurt so bad that she does not think she can take another step.

Yet, she continues to wear them.

She gets funny looks wearing these shoes. I can tell in others eyes that they are glad they are my mommy’s shoes and not theirs. They never talk about my mommy’s shoes.
To learn how awful her shoes are might make them uncomfortable.

To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off.

I now realize that my mommy is not the only one who wears these kinds of shoes. There are many pairs in this world.

Some mommies ache daily as they try and walk in them. Some have learned how to walk in them so they don’t hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt.

No mommy deserves to wear these shoes.
Yet, because of these shoes they are stronger women.
These shoes have given my mommy the strength to face anything.
They have made her who she is today.
She will forever walk in the shoes of a woman who has a child with histiocytosis.

Thank you mommy for wearing those shoes for me!

Flying Horse Away Program

2009-11-17T12:04:00.001-06:00

The Flying Horse Away program sends children with serious illnesses to other Hole in the Wall Camps until Flying Horse Farms opens in Fall 2010.

Flying Horse Away sent over 80 kids to camp this summer.

Over the past three years, Flying Horse Farms has given the life-changing gift of camp to over 220 children.

Casino Night Donation To TXCCC

2009-11-17T12:03:00.000-06:00

Linn Energy presented a check for $115,509 to Texas Children's Cancer Center & Hematology Service. The proceeds were raised by at the Texas Children's Cancer Center Casino Night on September 24, 2009 at the Downtown Houston Aquarium. Texas Children's Hospital and Linn Energy organized the night of casino-style gambling, spectacular prizes, dinner and cocktails.

After the check presentation, representatives of Linn Energy visited with cancer center patients and participated in the arts and crafts activities in the outpatient clinic.

Christmas Cards For Noah Biorkman

2009-11-17T10:55:00.002-06:00

Noah Biorkman was diagnosed with neuroblastoma in 2007, when he was 3 years old. He went into remission, but then relapsed in September 2008. His family is not expecting him to make it to Christmas Day.

Noah and his family asked for Christmas cards to be sent to help their family celebrate Christmas on November 8. People around the country responded and sent more than 100,000 cards.

His parents recently posted the following request of Noah's Carepages website:

Wow! The outpouring of love and concern for Noah is just amazing! Scott and I never in a million years thought that so many people would want to send Christmas cards to Noah. However, please note: We did already celebrate Christmas LAST Sunday -- November 8th.

PLEASE STOP SENDING CARDS AND GIFTS!!!!

Noah is very ill. He is not getting out of bed and it's time for Scott, our families, and I to concentrate on our son. His time is very short and he needs us.

Scott and I would like to say thank you so much for the support and continued show of love. However, we are asking that everyone please stop sending cards and gifts.

Also, everyone please post the stop order on Facebook and any other websites or organizations that you belong to. We need the peace right now.

Thank you for your understanding in this request.

Histio Heroes and Angels

2009-11-03T05:04:00.003-06:00

We wanted to highlight several recent stories about brave histio warriors and angels who have battled or who are continuing to battle against histiocytosis:

Maya Chamberlin
4 Year Old Maya Needs Bone Marrow Donor Urgently

Elijah Cullison
Classmates Looking To Raise Awareness After Friend's Death

Jillian Leigh Davidson
Daughter's Spirit Lives On Through Dinner-Fundraiser

Jessica Siedel
Golfers Tee Up to Support Local Girl and Family

Click on the story titles to read more about these brave children. Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

Great News From Kasey's Krafts

2009-11-03T04:27:00.000-06:00

We wanted to share an update from Kasey's Krafts, Inc. about the wonderful work that is being done to help children at The Children’s Hospital in Denver, Give Kids the World and Ronald McDonald House Denver.

Kasey’s Krafts Inc. made over 600 Halloween kits! These were distributed to The Children’s Hospital in Denver, Give Kids the World, and Ronald McDonald House Denver. Thanks to the ongoing devotion of Kasey’s Grandma the kits were delivered on time despite Kasey’s recent hospital admission for pneumonia. This was in addition to our standard monthly commitments of general craft kits.

Get Involved!

We would like to update you on the success of the inkjet drive. As you may recall we are collecting used (or if you don’t need them new) ink and toner cartridges as a fundraiser. We received over 100 cartridges which is awesome. Pennies turn into dollars, which turns into smiles on kids faces. Due to the success, we are expanding our drive to include old cell phones, MP3s and PDAs. All of these can be dropped off at The UPS Store, located at Lincoln & Jordan in Parker. Just tell them they are for Kasey’s Krafts. Don’t feel left out if you are out of the area, you can still collect these and send them to us, let us know and we will coordinate with you!

New Offering!

We are very excited to announce a new concept we are trying to roll out. We are collecting Nintendo DS Games for re-distribution. So as you are getting ready for the holidays and are cleaning out your kids games, why not donate them to Kasey’s Krafts Inc? Again, just drop them off at the UPS Store at Lincoln & Jordan noted that they are for Kasey’s Krafts! We have experienced the joy that DS games bring do our little fighters and can’t wait to start this program! We will also collect Nintendo 360 and Wii games. These are the systems most available at the hospital. Being in the hospital recently, we experienced the downtime and are excited to help out in this new way.

Thank you for your ongoing support, you can help out by participating in any of the drives to collect items, by in-kind gifts, or donations. Check out our website for more information! www.KaseysKrafts.com If you would like a receipt, please provide your email address so we can send you a receipt for your donations.

We sincerely appreciate your ongoing support!

Katie & Kasey

You can read more about Kasey's Krafts and how you can help on their website -- http://www.kaseyskrafts.com -- or by joining their Facebook group -- http://www.facebook.com/group.php?gid=150184964533

Notes Left Behind

2009-11-02T04:28:00.006-06:00

Notes Left Behind is the true story of a six-year-old girl named Elena Desserich who left behind notes for her family when she knew she was dying of brain cancer.

Elena hid the hundreds of notes everywhere in the house, the first were found in a backpack. Others were hidden between books, in the corner of dresser drawers, between dishes in the china cabinet or between photos stacked away in boxes, even in Christmas decorations.

In her last days she showed a community how to love and how to live. When her cancer stole her ability to speak, she turned to drawing and painting, her kindergarten passion. Elena had one of her drawings hung next to her favorite painter, Pablo Picasso, at the Cincinnati Art Museum. The painting titled “I Love You” was the fulfillment of her short, life-long dream.

In her short time, she accomplished a truly spectacular series of wishes that she alone created and inspired a cause that remains today to help children everywhere in their fight against brain cancer -- The Cure Starts Now.

Birthday Wish To My Angel

2009-11-02T04:25:00.003-06:00

Happy Birthday to my angel Sydney!!!

You are missed by many, loved by all and will never be forgotten.

You have inspired so many people to help other brave warriors.

You are many things but you will always be my little girl.

Love, Daddy.

Histio Heroes In The News

2009-10-27T07:31:00.002-05:00

We wanted to highlight several recent stories about brave histio warriors who are battling against histiocytosis:

Skylear Edmond
Community Helps Little Girl With Cancer

Tatum Null
Make-A-Wish, BNSF Team Up For Children's Train Ride

Madison Ursillo
Rare Immune Disorder Strikes Family Twice

Click on the story titles to read more about these brave children. Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

Coping Tools For Cancer And Histio Families

2009-10-26T19:01:00.003-05:00

We wanted to share a great post from Bridget Colby (HLH/BMT mom) about the initial steps in dealing with your child being diagnosed with histiocytosis or pediatric cancer.

In looking back at how our family coped with our daughters diagnosis of HLH there were things we used to cope. I wanted to share them.

Some simple steps to think about in dealing with the reality of your child being diagnosed with a devastating illness.

Step One: Remember to breathe. Sounds simple, but when things are going bad you will probably find that you are holding your breathe alot.

Step Two: When things are not going so well, the present is this minute. Right here, right now. As things get better you can relax and move to hour by hour. Then day by day. Even rollercoasters have there end. Just hang on and try only to get through one dip at a time.

Step Three: You remember things that comfort your child. What about yourself?
Bring things to the hospital that you would find at a day spa, or something you would take on a romantic weekend. Things that make you,and only you feel better. Take your pillow, a favorite blanket, comfy pair of socks, hand cream and put your feet up once in a while.

Step Four: Take breaks. When you can take a short walk outside. This will go very far in helping to recharge.

Step Five: Say "Thank you!" to the offers of help and accept them!!!!! You are not in this alone. You need these to get through this. Do this now so you will have reserve if something bigger happens. Let family and friends help you prepare for homecoming,make meals, do laundry or whatever they can.

Step Six: Choose your battles. Accept what you can. There will be times when there is just no answer, don't waste your energy trying to change that. There will be people that you will not get along with. Ignore them and save your energy for where it counts.

Step Seven: This is the new "normal". Nothing will be the same from now on. The good thing is that the new "normal" will start to feel okay, eventually. You have all been changed in many ways.

Step Eight: Take time everyday to be the family that you are no matter what is going on. Continue to strengthen the foundation you have built. This is what will hold you all up in times of trail.

Step Nine: This too may sound strange but try to laugh. It is one of the best ways to combat stress. I may not seem like it now but you will be able to laugh again. You will understand this with the first "She made a poo!!" happy dance and song.

Step Ten: You are not alone. Don't try to hold everything inside. There are many people willing to help,listen and get you through the moments that you will feel at your lowest. Reach out.

These are just some things to think about.
What are your coping tools?

Jacob's Wish

2009-10-26T10:52:00.005-05:00

Please take a moment to read a great post from Reis Baron about his son Jacob (LCH warrior) and their family's experience with histiocytosis.

Jacob's been doing so well!! He's even had a cough (his first that we can remember) this week and it hasn't slowed him down a bit. We still kept him home from school today to make sure it didn't escalate or challenge his breathing. One thing about living with LCH is that the normal school-kid illnesses put you on hyper-alert, and it's hard to know if a cold might lead to a fever, which might lead to who knows what. So admittedly amidst the honeymoon phase we're still stressed when confronted with some of the more common toddler issues. You learn to live with it and move on with a watchful eye.

Last we left this saga we were looking forward to good bloodwork, which thankfully we got on the 12th. So Jacob had his final shot of Vinblastine, and completed his final round of Prednisone. Tomorrow is his last day of Pepcid, and best of all we've tried the 6MP (oral chemo) with some Grenadine by mouth and he loved it. This is HUGE, as it means (for now anyways) we will have no problems with the oral meds once the G tube is out. We were so worried that he wouldn't like it. Imagine having to give your child something by mouth every day for a year and they don't like it? OUCH...glad we don't have that problem...yet, anyway ;-).

The 12th was quite a day. Along with the good bloodwork in the morning, Jacob got a visit that evening from our new friends at the Make A Wish Foundation. Jacob's lead oncologist recommended him for the program, and with the help of the social work staff at Tomorrow's Children Jacob was officially asked to make his wish. We were honestly surprised, as we originally thought that Make A Wish was specifically for kids with terminal conditions. But we learned that the program more broadly covers children with life-threatening illnesses, regardless of the current state of their prognosis/recovery. It's been very humbling getting acquainted with the organization, and we're truly blessed to have them in our lives.

They came in with a cool Thomas the Tank Engine bag with a few new trains for Jacob's collection, and we discussed the gift that we felt would be ideal for him. Obviously at his age it's a bit early to take full advantage of anything from a Disney trip to meeting a celebrity. But with physical development being a major concern right now, we felt that something geared toward helping him strengthen on a daily basis would be ideal. Little did we know when they say "dream big" they really, really mean it. So we've officially gotten word that in the early spring of 2010 Make A Wish will be installing an above-ground swimming pool for Jacob in our back yard. WOW!!!! We really still cannot believe it. What an amazing gift...it is truly humbling to say the absolute least.

Needless to say 2009 has been a turnaround year for us. Quite amazing how every day has been a step further away from those days in the PICU when Jacob was indefinitely unconscious. And it's so unfortunate that in the amazing community of people we have met throughout this experience, we are confronted with sobering stories of kids who are facing huge challenges with Histiocytosis and similar rare conditions. It's so tough to hear about some of these kids who lose their battle with the disease. It's just so cosmically wrong, and just so brutally sad. We've been lucky to encounter some amazing people along the way, and we want to acknowledge them, as we've learned so much, and because of their hard work we realize how much we can do to raise awareness of these rare diseases. Here are a few children whose stories you should absolutely check out:

Ivy Kate's Story - We stumbled across Ivy's story, and we were intrigued that her course of treatment was remarkably similar to Jacob's. We reached out to her amazing family when we were in the PICU, and they gave us some invaluable perspective and encouragement. Ivy is doing well these days after battling LCH (among many other things) since she was 3 months old (2004).

Sydney's Story - While Sydney was sadly only with us a very short time, her story is amazing and her family's efforts to spread the word about Histio conditions is truly incredible. Sydney's blog is an amazing resource of information on countless Histio cases, as well as fund-raising events and information. Many thanks to Michael Golding, Sydney's Dad, for his tireless efforts to spread the word.

Henry Goldberg - While settling in at the hospital, for what would be a several-month stay, we were greeted by one of the Tomorrow's Children social workers holding a messenger bag. On it were the words "Hope for Henry". He presented us with the bag, which we opened to find a portable DVD player for Jacob. Such a generous gift, and we were stunned to find out that Henry was a boy who lost his battle with a rare form of anemia in 2002. The Hope for Henry organization, started by Henry's family, has given out hundreds of high-end electronic items to children facing life-threatening illnesses. We were overwhelmed by their generosity in our time of need.

These stories, among the many we've read at Caring Bridge, are constant reminders that we have so much work to do in spreading the word about LCH and other rare illnesses. Once you face this disease it becomes part of your life mission to get the word out, and help in any way you can. All of the above people have taken that concept to the next level, and we look forward to doing our part so our efforts can hopefully bring some comfort to families who will unfortunately face this disease in the years to come. They say every journey begins with a small step. We're so thankful that we're fortunate enough to see the path ahead of us now. Here's to stepping cautiously...

Many thanks to you all...Much Love...

You can read more about Jacob on his blog -- The Jacob Skye Baron Blog.

Senator Brown Speaks About Childhood Cancer

2009-10-25T19:23:00.002-05:00

U.S. Sen. Sherrod Brown (D-OH) recently delivered a speech honoring Alexa Brown, an 11 year-old Northwest Ohioan who recently passed away due to brain cancer. Sen. Brown announced a joint letter he wrote with Sen. George Voinovich (R-OH) urging Congressional colleagues to direct an additional $10 million for pediatric cancer research.

“Alexa was an active, happy, and beautiful little girl. Her courage in the face of such tragic circumstances was inspiring,” Brown said. “Unfortunately, Alexa’s battle with cancer is not an isolated case. Cancer is the number one cause of non-accidental death in children. It is responsible for more deaths from ages one to nineteen than asthma, diabetes, cystic fibrosis, and AIDS combined. And in the Clyde area of Ohio – in the Northwest part of the state – nineteen other children have been diagnosed with a form of invasive cancer in the last decade.”

Brown continued: “Today – on the last day of Childhood Cancer Awareness Month – Senators Voinovich and I have sent a letter to appropriators urging that the final Labor-HHS package include $10 million specifically for pediatric cancer research.”

You can watch Sen. Brown’s complete remarks as delivered in the video above. BTiy can read a copy of Sen Brown’s joint letter with Sen. Voinovich can be found HERE.

Manifesto -- Lance Armstrong Foundation

2009-10-25T19:15:00.003-05:00

We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.

LIVESTRONG.

Histio Heroes and Angels

2009-10-20T11:24:00.001-05:00

We wanted to highlight several recent stories about brave histio warriors who are battling against histiocytosis or who have triumphantly overcome this disease:

Deakon Beavers
What Makes You So Special?

Maya Chamberlin
Youth Fishing Program Sponsors Bone Marrow Drive

Dana Juat
Diagnosed With HLH Disease

Ibrahim Meer
Plea For Bone Marrow Donor

Ilai Mishori
For Him, a Drop of Blood. For Us, He Saved An Entire World.

Parker Pruitt
Celebrating A Little Survivor

Jessica Siedel
Tourney Planned For Young Bone Marrow Transplant Patient

We also wanted to take a moment to remember and recognize several brave histio warriors who recently lost their courageous battles against histiocytosis:

Matt Cwiertny (24 Years Old -- HLH)

Benjamin Levie (7 Years Old -- HLH)

Jeffrey G. Smith (13 Years Old -- HLH)

Click on the story titles to read more about these brave children Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

Our Promise To Histio Heroes And Angels

2009-10-20T11:23:00.001-05:00

The histio community has seen far too many courageous angels lose their battle against histiocytosis over the past few months along with those brave warriors and their families who are continuing to battle against these diseases.

This photo from a LIVESTRONG event says all that needs to be said about how we should approach the fight against histiocytosis and how we can honor the lives and struggles of those histio heroes and angels.

THEY DIDN'T QUIT ... I WON'T QUIT!!!

Pablove Across America (Day 9) – Four Mothers to Children with Cancer

2009-10-20T11:13:00.005-05:00

On his day off in New Orleans, Jeff Castelaz caught up with Joann and three other mothers to children with cancer. Here's a little insight into what they went through.

You can learn more about Jeff's ride (Pablove Across America) and how you can join the fight against pediatric cancer on the Pablove Foundation website -- http://www.pablove.org.

LIVESTRONG and ARTHUR

2009-10-20T11:09:00.005-05:00

The Lance Armstrong Foundation has teamed up with ARTHUR, the award-winning children’s series, to create a special episode plus free resources that will help families and schools talk with kids about cancer.

In “The Great MacGrady,” Arthur and his friends deal with the cancer diagnosis of their favorite lunch lady — with the help of Lance Armstrong. The show premieres on PBS for five consecutive days throughout the week of October 19, 2009 – check local listings for broadcast times.

The Family Activity Booklet offers advice and ideas for how to talk with children when a loved one has cancer. In addition, two new LIVESTRONG at School K-2 lesson plans give teachers creative and innovative tools for the classroom. Order free class sets of When Someone You Know Has Cancer and download LIVESTRONG at School lesson plans at www.livestrong.org/elementaryschool.

Histio Heroes and Angels

2009-10-11T11:34:00.002-05:00

We wanted to highlight several recent stories about brave histio warriors who are battling against histiocytosis:

Matthew Diehl
Diagnosis Of Rare Blood Disease Saves Boy’s Life

Noleina
Students Brave Cold to Help Ill Classmate

Jessica Siedel
Teenagers With Life-Threatening Illnesses Share Special Weekend

We also wanted to take a moment to remember and recognize a brave histio angel who recently lost her courageous battle against histiocytosis:

Irelyn Rose Fredock (16 Months Old -- LCH)

Click on the story titles to read more about these brave children Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

Pablove Across America

2009-10-11T09:44:00.002-05:00

On October 10, 2009, Pablo’s dad, Jeff Castelaz, along with his cycling coach, Rick Babington, will embark on a 3,100 mile ride spanning the entire US. They will start in St. Augustine, FL and in the course of 30 days on their bikes, make their way to Pablo’s grave at Forest Lawn Hollywood Hills in Los Angeles.

Pablove Across America is Jeff’s show of commitment to fighting kids’ cancer—and his need to wring out his soul of its sadness. Along the way, he’ll visit children’s hospitals to connect with cancer kids just like Pablo. He’ll promote cancer awareness on radio, television and in the written press. Anything to drive home the mission of the Pablove Foundation, and to keep Pablo’s spirit and boundless energy alive.

Pablove Across America is about standing up, hammering the pedals, speaking out and FIGHTING back—to raise awareness that kids get cancer, families need help and hope—hope not only to find a cure, but in the day-to-day grind of treatment.

Join the fight against children’s cancer. Support Jeff’s ride.

You can read more about Pablove Across America on the Pablove Foundation website -- http://www.pablove.org

Boy's Fight Against Brain Cancer Inspires Superhero Comic Book

2009-10-11T07:52:00.003-05:00

We all know that kids fighting cancer, histiocytosis and other life-threatening diseases are superheroes. We wanted to share a great story about about a brave little boy battling brain cancer who has inspired his own superhero comic book.

No one has ever told 7-year-old Dominic Osorio that he has brain cancer. Instead, his mother devised a story and made him the lead character. When Dominic undergoes surgery, chemotherapy or radiation, he is not a patient; he is the Dominator, waging war with an evil enemy that he calls a megazoid.

His grandmother, Monique Spagna, recalled the day Dominic finished weeks of daily radiation treatments at Johns Hopkins Children's Center that required the Bel Air boy to wear a mask and remain motionless for what seemed an eternity to a child.

"He could not move, so he would change identities and be the Dominator battling an enemy he called a megazoid," she said. "His mother came up with this story to help him deal with it."

On the last day of treatment, Dominic followed hospital tradition and rang a bell to signal he was done, she said. "So many others were inspired," she said. "They said if this kid could do it, so could they."

Many have come to know the story of the indomitable child and joined his crusade. Dominic, who was diagnosed with cancer in 2007, has inspired not only the new superhero character, but a comic book with a strong possibility for sequels, an official proclamation from Harford County government and a fundraising effort for children's hospice.

Dave Anderson often met Dominic and his family at the Bel Air restaurant he manages. The child would arrive with the usual boyhood bumps and scrapes and would banter with Anderson about how the arm was broken or the knee was scratched. But when Anderson learned about the Dominator and how Dominic was battling for his life, he went to work on fundraising and something he never expected - a book.

"People need to hear this kid's story," Anderson said. "He is a real motivator. All kids are our motivators, and they are what is important."

The more he heard about Dominic's trials, the more determined he was to help him and other children with cancer.

"Dominic is an awesome kid, who never got scared at what he had to go through," Anderson said. "He really is the superhero in this story. This one little boy has touched many lives."

Anderson helped create "The Dominator" character and a comic book tailored to children. He contacted Getz-Calandra Productions, which put together the illustrated book with a story line based on Dominic's struggles.

"We took a simple approach with the story and made it readable especially for kids in the hospital," said Tony Calandra of Abingdon, who also works as a physical therapy technician. "We have had big interest already. If this character takes off, there will be a second issue."

Anderson paid nearly $9,000 to design, create and copyright the Dominator and to publish 2,000 copies of the book. About 1,000 copies have been sold since the $5 book came out last month, with proceeds from sales benefiting children's cancer research.

"The more I got into this, the more I knew it was a powerful thing," he said. "I am dedicating 'The Dominator' to making sure that kids like Dominic have everything they need."

Anderson has organized several fundraisers, the most recent last month centered on a superheroes theme that included a proclamation of Superheroes Day by the Harford County executive. Officials used the event to focus on childhood cancer and to recognize "the unselfish and countless acts of heroism that people demonstrate every day in supporting children" who are fighting for their lives, the proclamation says.

The Dominator, in a red bodysuit with a large navy blue D on his chest, appeared with more well-known characters at that event and at several other fundraisers. Anderson in Dominator regalia has visited Dominic at Hopkins, along with Paul Day, who donned Batman attire.

Day, as Batman, recalled how he had stopped in to see Dominic at home last Christmas and what he whispered in the child's ear.

"I told him that I knew he was the Dominator, a superhero just like me," Day said.

The tumor continues to grow in Dominic's brain, despite the best efforts of his doctors. His mother, Nicole Spagna, is keeping a round-the-clock vigil at his side at Hopkins.

"His eyes are not open, but he knows we are all there," said Monique Spagna. "He has been fighting for two years, and he is still fighting. He always told us to believe. We are still hoping there is one more treatment to try."

Nicole Spagna said she wants her son's story to help other children coping with cancer. His grandmother has vowed to work to establish a local hospice dedicated solely to children and their families, and she will continue to raise funds for children's cancer research.

"In my heart, I know Dominic has made a big difference and has shown that he is a caring person," Monique Spagna said. "I am still praying for a miracle for him. I believe in miracles."

You can read the original story in the Baltimore Sun -- http://www.baltimoresun.com/news/maryland/harford/bal-md.ha.dominic07oct07,0,4549865.story

Remembering Liam

2009-10-09T14:24:00.003-05:00

A service is being held tomorrow to celebrate the life of Liam Schulze, a brave histio warrior who recently lost his battle against HLH. We were lucky enough to meet his parents (Chris and Michelle) at Hike for a Cure where they hiked to the top of Half-Dome in their son's honor.

Please take a moment tomorrow morning to remember Liam and the brave histio angels who have left us far too soon.

Liam Christopher Schulze, born January 2, 2008, earned his angel wings at 20 months of age on September 9, 2009. Liam fought an extremely difficult battle against a rare blood disease, Hemophagocytic Lymphohistiocytosis (HLH) and complications post bone marrow transplant. Liam's life, although short in days, was very rich in love, smiles, and memories we will cherish forever. He touched all who knew him and reminded us all the true importance of life and that each day is a gift. We are honored to be his parents and to have been on this incredible journey with him. Liam will be in our hearts forever, and his amazing strength and spirit will continue to inspire us each day. He truly was our little powerful warrior.

Liam Christopher is survived by his proud parents, Christopher and Michelle Schulze, Colorado Springs, Colorado, grandparents Frank and Rose Ann Podminick, Colorado Springs, Colorado, Don and Connie Schulze, Boca Raton, Florida, and Stan and Gayle Slezak, Wyoming, Pennsylvania, uncles and aunts Jeff and Kim Kleiss, Chris and Sabrina Slezak, and cousins Zachary and Juliana.

Family and friends are invited to join us for a service to celebrate Liam's life at Holy Apostles Catholic Church, 4925 N. Carefree Circle, Colorado Springs, Colorado, October 10, at 10 a.m. There will also be a memorial mass at Sacred Heart of Jesus Church, 529 Stephenson Street, Duryea, Pennsylvania on October 17, 2009 at 10 a.m.

In lieu of flowers, we ask that donations be made, in Liam's honor, to the Histiocytosis Association of America, 332 N. Broadway, Pittman, New Jersey, 08071, 800-548-2758, to help continue the research of HLH and search for a cure. We also ask our community to consider donating the gift of platelets, blood, and bone marrow.

You can read more about Liam and his courageous battle against HLH on his CarePages website -- https://www.carepages.com/carepages/LiamsLighthouse.

Histio Headlines

2009-10-03T12:53:00.010-05:00

We wanted to highlight several recent stories about a histio angel who still inspires and several brave children who are battling against histiocytosis, including several children whose families participated in Hike for a Cure:

Karleigh Hobart
Family’s Loss Emphasizes Need For Marrow Donors

Cole Kambeitz
Ryan Shifflett
Montclair Mom To Tackle Yosemite Trails For Her Son

Oscar Perez
Local Supermarket Chain Holds Bone Marrow Drive For Toddler

Grace Urban
Rare Disease Only Strikes Five Children Out Of Every Million

Click on the story titles to read more about these brave children Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

LIVESTRONG Day

2009-10-03T08:43:00.005-05:00

LIVESTRONG Day - October 2, 2009 - is a global day of action to raise awareness about the fight against cancer. Lance Armstrong wrote an editorial for the Austin American Statesman today about the anniversary of his cancer diagnosis, his cancer story, lack of insurance at diagnosis and how we need to fight for healthcare reform in this country.

Today is LIVESTRONG Day, a global day of action to raise awareness in our communities about the fight against cancer.

Today is also the 13th anniversary of my own cancer diagnosis. Like most 25-year-olds, I was fearless, ready to conquer the world and, because I was in the midst of changing employers, without health insurance. I was lucky. One of my sponsors, Oakley, stood up for me and threatened to take all of their business elsewhere if their insurance carrier refused to cover me. Without their help, I might not be alive today. Or I might be completely broke, still trying to dig my way out of a massive pile of medical bills.

That kind of luck shouldn’t have anything to do with whether the 12 million people around the world who will be diagnosed with cancer this year go broke trying to get the treatment they need to survive.

Cancer is projected to become the world’s leading cause of death next year. More than 28 million people around the world are living with cancer today and, without greater progress in detection, prevention and treatment, that number could triple by 2030.

If the cancer epidemic continues to grow as predicted, it will have a devastating effect on world economies. A new Economist Intelligence Unit study commissioned by the Lance Armstrong Foundation pegs the global economic impact of the disease at more than $300 billion in 2009 alone. In coming years, developing nations will be forced to spend increasing amounts of money on treatment and on public assistance to patients. In the U.S. and Western Europe, where aging populations are already straining public health costs, the rise in cancer means an ever greater percentage of national budgets will be devoted to healthcare.

Support the 28 million people affected by cancer. Take action in the fight against cancer. Join the fight! Go to http://www.livestrongaction.org.

Hooray For H4AC

2009-10-02T22:20:00.010-05:00

HIKE FOR A CURE has raised more than $175,000 so far this year and has now raised more than $1 MILLION for histiocytosis research over the past nine years.

CONGRATS and many thanks to Ron & Colleen McPeek Bechtold for their tireless efforts and endless enthusiasm in making this event such a HUGE success on so many different levels.

We had an amazing weekend and were able to meet many wonderful histio families who each had a story to tell about their hsitio experience -- some uplifting, some hopeful, some heartbreaking. We were truly honored and proud to be hiking with these families and in support of histio heroes and angels.

We also were privileged to be able to participate in the Saturday evening ceremonies and introduce our friend and world-renowned histio expert -- Dr. Ken McClain -- who shared exciting news about breakthroughs in histio research which hopefully will lead to better treatments in the near future and eventually a cure.

THANKS to everyone who supported TEAM HIKING FOR HISTIO HEROES!!!

On a personal note, this weekend was made even more truly special and unforgettable when my girlfriend Leslie accepted my marriage proposal at the top of Half Dome.

What a great weekend!!!!

Hike For A Cure 2009 -- The Colby Clan

2009-10-02T22:18:00.005-05:00

We want to thank Bridget Colby for preparing this video from Hike for a Cure 2009 and for being willing to share her family's experience with histiocytosis:

We joined The Hike For A Cure in 2006. It is a one day hike to the top of Half Dome, Yosemite. It is a grueling one day, 18 mile roundtrip with a 4800 foot ascent to honor the children, adults and families affected by histiocytosis. It is meant to symbolize the hardships faced during diagnosis, treatment, living past treatment and loss of loved ones.

You see, many affected with HLH die before they are diagnosed. Much of the knowledge to treat our daughter came from other children who past away. There are no public funds for research as histio affects too few to garner attention from the public resources. It is through grass roots efforts such as the Hike For A Cure that all fund for research are derived.

Once a year we are blessed to share the wonders of Yosemite with families from across the country. In this one weekend we commiserate, mourn, laugh, cry, recharge, get engaged and connect with our family that is histio.

The Colby Family has participated in the hike for the past four years. It is during this weekend this year that we were privileged to see a portion of the Ken Burns film. For our family Yosemite is the one place in the world we feel everything is right.

Its beauty is the reminder of hope we carry all year, through many unanswered questions.

Run. Bike. Hike. Walk. Run.

2009-09-18T09:19:00.006-05:00

Sounds like a pretty good cross-training program but actually is something you can do without even leaving the comfort of your house ...

SUPPORT HISTIOCYTOSIS RESEARCH!!!

YOU can make a difference in the fight against histiocytosis by donating to or sponsoring histio families participating in these fundraising events being held over the next month:

Histio Heroes 5k & Little Heroes Hop (September 19 -- Batavia, Illinois)

http://histioheroes.kintera.org/faf/home/default.asp?ievent=306941&lis=1&kntae306941=3528C9FBEFAE4FCAAE55BCCCC85B4E25

Bike Ride for Sam (September 26 -- Fayetteville, North Carolina)

http://www.active.com/page/Event_Details.htm?event_id=1782248&assetId=9A9D3523-D778-42FB-ACC4-7BDAEA39854E

Hike For A Cure (September 27 -- Yosemite, California)

http://www.histio.org/faf/home/default.asp?ievent=310572

SoCal Histio Walk (October 11-- Burbank, California)

http://socalhistiowalk.kintera.org/faf/home/default.asp?ievent=323133

Run for Funds to Support Histiocytosis (October 18 -- Detroit, Michigan)

https://www.kintera.org/AutoGen/Simple/Donor.asp?ievent=286244&en=kpJHLQPsH7ILJONoG7JHL0OAKfLRJUMuEdIRI6NMF

PLEASE encourage your family, your friends, your co-workers and even complete strangers to support one of these great events over the next month.

EVERY dollar will help in the fight against histio and support our brave histio heroes and angels!

Histio Warriors and Angels

2009-09-13T15:35:00.000-05:00

We wanted to highlight several recent stories about brave children who are battling against histiocytosis:

Declan Bennett
Nurses 'Dec' The Halls With Birthday Wishes

Tanner Bertauche
Childhood Cancer Awareness Day

Kasey Fox
A Prescription For A Smile

We also wanted to take a moment to remember and recognize a brave warrior who recently lost his courageous battle against histiocytosis:

Liam Schulze (20 months old -- HLH)

Click on the story titles to read more about these brave children Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

Kasey's Krafts

2009-09-13T11:48:00.011-05:00

Kasey Alexa Fox is a five year old, who loves to play, sing and spend time with family and church friends. On November 14, 2007, at age three, Kasey was diagnosed with Langerhans Cell Histiocytosis (LCH). Kasey completed her initial round of chemotherapy in June 2008, has relapsed twice and is currently on chemotherapy.

Even though she is dealing with her own disease, Kasey wanted to do something to help other brave kids undergoing chemotherapy for histiocytosis and pediatric cancers. Along with help from her mom and grandmother, Kasey decided to make craft kits for all the other kids in the pediatric oncology unit at Children's Hospital in Denver. To date, she and her grandma have made 1,650 of the kits that are now called "Kasey's Krafts."

Kasey’s Krafts is a foundation which now provides craft kits to pediatric oncology patients at Children’s Hospital in Denver, Colorado and has grown to support a variety of other facilities. They are used in the outpatient clinic as well as the inpatient area. Chemo kids spend a lot of time waiting, whether it is for infusion treatment or for lab results. These kits help them take their mind off the underlying reason they are at the hospital. The children love making projects and they have such a sense of accomplishment when they are finished. Their faces reflect the enjoyment with smiles.

Making A Mark

2009-09-13T11:44:00.004-05:00

Making A Mark provides artistic and creative writing opportunities for children undergoing treatment at Texas Children's Cancer Center. Each year, professional artists and writers, with the help of volunteers, work with the patients and their siblings.

More than 400 patients and their siblings from our clinic participate, free of charge each year. Making A Mark is open to children from all pediatric cancer treatment centers, and has attracted art and writing submissions from around the world.

The program takes place in the waiting room and the infusion area of the clinic and provides patients and siblings something to look forward to when coming in for treatment. More importantly, it is an important outlet for expressing feelings and fears about the cancer treatment process. As a result, the children develop coping skills and in a situation where they feel that everything is out of their control, they are totally in control of their art and writing.

The highlight of the Making A Mark art program is the month long exhibit in the fall of each year at Texas Children's Hospital. Most of the submissions to this judged show come from Texas Children's Cancer Center, but clinics all over the world are invited to participate. The art that the children created with the professional artist is the centerpiece of the event. Many of the young artists attend the opening and take pride in discussing their art with guests from the Houston community.

National Childhood Cancer Awareness Day

2009-09-13T08:01:00.010-05:00

The United States Senate passed a resolution (Senate Resolution 200) designating September 12, 2009, as National Childhood Cancer Awareness Day.

The resolution pledges to make the prevention and cure of cancer a public health priority. The resolution also urges public and private sector efforts to promote awareness, invest in research, and improve treatments for childhood cancer.

Contact your Senator and ask him/her to honor this pledge by supporting full funding of the Caroline Pryce Walker Conquer Childhood Cancer Act and increasing funding for cancer research at the National Cancer Institute.

Histio Heroes And Angels

2009-09-06T16:06:00.004-05:00

We wanted to highlight several recent stories about brave children and adults who are battling against histiocytosis:

Lewys Betty
Lewys Revels In Pontnewynydd Charity Day

Tatum Cook
Fund-Raiser To Aid Local Toddler With Rare Disease

Bryson Fanning
Men Act Lady Like for Charity

Sydney Martin
Difference Makers: She Rocks
‘Tween Raises $70K+ To Fight Rare Disease

Elisabeth Sprissler
Little Sparkplugs For Cancer Research

We also wanted to take a moment to remember and recognize a brave warrior who recently lost his courageous battle against histiocytosis:

Andrew Akin (2 years old -- HLH)

Click on the story titles to read more about these brave children Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

Syd Rocks for Histiocytosis

2009-09-06T15:38:00.007-05:00

In September of 2007, after a lesion was discovered in her cheekbone, 1o year old Sydney Martin was diagnosed with Langerhan’s Cell Histiocytosis (LCH). After a biopsy confirmed her diagnosis, Sydney underwent surgery to have a port implanted in her chest through which she received six months of chemotherapy along with high doses of steroids. Sydney has been doing well since finishing treatment.

Sydney found beautiful rocks on the beach of Lake Michigan and turned them into necklaces with a simple string. She started selling Syd Rocks necklaces to raise money for histiocytosis research. She has raised $75,000 to date and plans to continue making and selling her rock necklaces until a cure is found.

You can purchase a necklace or a t-shirt on the Syd Rocks website -- www.sydrocks.com. 100% of the money earned from her Syd Rocks for LCH necklaces will be donated for medical research to find a cure for LCH and $10 from each t shirt sale will be donated to the Sydney Martin Foundation.

Histiocytosis Awareness Month

2009-09-06T13:48:00.008-05:00

September is Histiocytosis Awareness Month.

Help raise awareness.
With awareness comes funding.
With funding comes research.
With research comes a cure.

Imagine A Cure!!!

How can you help raise awareness?

Educate a friend about histiocytosis.
Send a personal story to your local newspaper.

More ideas and information about Histiocytosis Awareness Month are available on the Histiocytosis Association of America website.

Childhood Cancer Awareness Month

2009-09-06T13:04:00.005-05:00

Did you know?

One in every 330 Americans develops cancer before the age of twenty.
On the average, 36 children and adolescents are diagnosed with cancer everyday in the United States.
Each year about 3,000 children die. That's 11 children every single day, every single year. About 35-40,000 more are in treatment each year.
On the average, one in every four elementary schools has a child with cancer. The average high school has two students who are current or former cancer patients.
Cancer is the leading cause of death by disease in children under the age of 15 in the United States, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined.
Childhood cancer has a huge societal impact - 180,000 potential years of life are lost to it EVERY year!
The causes of most childhood cancers are unknown. At present, childhood cancer cannot be prevented.
The median age for childhood cancer is six. Children frequently have a more advanced stage of cancer when they are first diagnosed. 80% of children show that cancer has spread to distant sites in the body when the disease is first diagnosed.
Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.

Despite these facts, childhood cancer research is vastly and consistently underfunded. The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

PLEASE write your members of Congress to demand full funding of the Caroline Pryce Walker Conquer Childhood Cancer Act. The current proposed funding is $10 million, $20 million short of Public Law 110-285 as authorized by Congress.

What else can you do?

Contact SOMEBODY! Please take it upon yourself to write the media. Locally and nationally. Give the stats and talk about funding issues. This will help raise awareness. With awareness comes funding. With funding comes research. With research comes a cure.

Histio Moms In The News

2009-09-05T05:53:00.008-05:00

We just wanted to share links to several stories that aired over the past week featuring histio moms talking about the importance of registering as a bone marrow donor and efforts to support other families facing histiocytosis, pediatric cancer and other life-threatening diseases.

Diane Hobart was featured in a story that talked about her late daughter Karleigh and the need for bone marrow donors to help children with life-threatening diseases like HLH. Thanks for sharing Karleigh's story and being so willing to help other families in her memory. Click HERE to watch.

Kelly Marsh helped organize a bone marrow drive that resulted in more than 160 people being registered as potential bone marrow donors. Kelly's daughter Hannah underwent a successful bone marrow transplant almost one year ago to treat HLH. Click HERE to watch this video.

Katie Fox was featured in a story about Gold Ribbon Families which is a parental support group for mothers of children facing pediatric cancer. Click HERE to watch this video.

Histio Heroes and Heroines

2009-08-30T00:11:00.005-05:00

We wanted to highlight several recent stories about brave children who have battled or are continuing to battle against histiocytosis:

Melanie Kurtz
Bone Marrow Donor And Recipient Together Once Again

Brianna Jeffries
Dolton Girl Finally Gets Transplant

Emily Schmidt

Prayers 4 Emily Fundraiser

Liam Schulze
Golf Tourney For Liam Schulze

Click on the story titles to read more about these brave children. Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

Sticking Your Head In The Sand

2009-08-29T22:48:00.002-05:00

Being the parent of a child with histiocytosis, pediatric cancer or another life-threatening disease is not easy nor something for which any parent asks. One amazing and incredibly strong histio mom recently summed up how many histio parents likely feel in dealing with this disease:
I know it could always be worse. It is just frustrating when you feel something is wrong but nobody will listen to you ... I have my days where I want to bury my head in the sand and not think about it ... But that is out of the question. We will continue to seek answers and tell each doctor we come in contact with ... It has to make sense to someone.
THANK YOU to everyone who refuses to stick their head in the sand and keeps looking for answers by asking questions and advocating for their children in the fight against histiocytosis.

Save A Life. Be The Match.

2009-08-28T09:23:00.004-05:00

Be The Match marrow registry is dedicated to saving lives. Donating marrow can give someone a future - a chance of overcoming leukemia or other life-threatening diseases. There are thousands of people of all ages in need of a transplant who won't make it without the help of others. Be The Match is focused on growing the registry to increase the chances of finding marrow matches for patients.

To join the marrow registry it takes just a few sample swabs from inside your cheek. After that you will be a registered marrow donor. Simple.

We need everyone's help. Through contributions, volunteering, donating umbilical cord blood, or by just spreading the word, you have the power to help.

Take the first step at BeTheMatch.org.

A Cancer Parent's Story

2009-08-24T19:20:00.012-05:00

A great and heartbreaking video for LIVESTRONG featuring a parent (Jeff) talking about his son (Pablo) and how parents deal with a child's cancer. Pablo lost his brave battle against cancer soon after making this video on June 27, 2009, but his memory lives on through the Pablove Foundation which supports the pediatric cancer community at Children's Hospital of Los Angeles.

Please take a moment to watch the video and then check out the Pablove Foundation website to learn more about Pablo.

Histio Headlines

2009-08-22T08:20:00.004-05:00

We wanted to highlight several recent stories about brave children who are battling against histiocytosis:

Declan Bennett

Birthday Party For Boy Who Faces Transplant

Kylee Ewing
Rare Disease Enters Child, Family’s Lives

Edna Walker

Johnny Depp Proves Just The Tonic For Sick St. Albans Toddler

We also wanted to take a moment to remember and recognize two brave warriors who recently lost their battles against histiocytosis:

Matthew Gouwens (8 months old -- HLH)

Tim Selinske (50 years old -- LCH)

Click on the story titles to read more about these brave children and adults. Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

In Loving Memory of Alex Scott

2009-08-21T09:55:00.008-05:00

The following post was written by the parents of Alex Scott (founder of Alex's Lemonade Stand) on the 5th anniversary of her passing and posted on the Alex's Lemonade Stand Foundation Blog:

Many of you know Alex as a courageous cancer advocate, a hero, the lemonade girl who was an inspiration to millions around the world. To us, she was all of these things but so much more…We would like to share with you the Alex we knew…our beloved little girl.

From the beginning, Alex did things her way – she came into the world in a hurry 13 ½ years ago, arriving more than a month before her due date. The doctor and nurse prepared us for the fact that she would probably be underweight and would most likely have to stay at the hospital for a few extra days – well, we were all surprised when she weighed in at 7 lbs. 2 oz and left the hospital with us 24 hours later. Looking back, we should have known right then that there was something special about our girl…

Alex was bright and smart. She had a vast knowledge of medical terms and kept close track of her medications. She always knew the names and dosages of her medications, as many as 6-8 pills at a time. She always checked on us. Alex often surprised us by knowing unusual facts…For example, she was quick to offer an accurate explanation of what a ficus plant was to her older brother Patrick when he came across the word and wondered aloud what it was; she would sometimes chime in with a solution to a tricky math or word problem; and she seldom came across a word that she did not know the meaning of.

Alex was protective. So much so that she earned herself the nickname “mother.” Her constant watching over of her brothers and us was most often accompanied by loads of advice, phrased in an adorable way, “I really don’t think I would do that if I were you…” or “Do you think that is such a great idea?” or, our favorite, “ I’ve told you a million times not to do that!”

Alex was determined. When her younger brother Joey was born someone sent us a baby swing. As we tried to put the swing together, we got very frustrated because there were no directions included. We left the room, giving up on putting it together. When we returned to the room some time later Alex had the swing put together. She said “I just need a screwdriver to tighten the screws.” When we asked how she managed to put it together she responded -“you should never give up, it’s never good to give up”

Alex was funny. One of her aunts visited shortly before Alex passed away and we were trying to pick a movie to watch as a family. Her aunt recommended a movie but then quickly said, “Actually I don’t think it is a good idea.” When Alex asked her why she had changed her mind her Aunt said, “Well, it is kind of depressing.” Alex immediately turned to look at her and said “trust me, I can handle depressing.”

Alex was confident. She believed she could do anything; even it was a physical challenge or an obstacle to overcome. She often said that if she could just get an audition for American Idol, she could definitely make it into the top 10. She was also confident that she was capable of defending herself and others against any dangers, after all, she would say, “I know karate.”

Alex was courageous. Despite often struggling with pain, fatigue, and other side effects, Alex rarely complained. As a matter of fact, about two weeks before she died Alex told us, very emphatically, after hearing us respond to another inquiry about how she was feeling – “Tell them I am fine. I am fine.” She showed this courage everyday, insisting that she was fine, always telling us not to worry about her.

Alex was wise. Several years ago we gave her the suggestion that she might want to try walking with the help of crutches because it might allow her to get around faster. Without hesitation she said “Haven’t you ever heard the story of the tortoise and the hare?” Then she said, with a smirk on her face, “slow and steady wins the race.”

Alex was thoughtful and kind. She was generous with brothers, friends, and other children she met at the hospital. Alex also made sure that special occasions were celebrated the right way. She also made sure they included a special gift from her ~ earrings on Mother’s Day, a framed photo on Father’s Day, a stuffed hand-knit cat she made for her baby brother Joey’s first birthday, and homemade party hats for the whole family for another brother’s birthday.

Alex was a girl with plans –– she was looking forward to showing her baby brother around Philly; she was determined to attend the first day of third grade, and shortly before she passed was asking about getting a motorized wheelchair so she could keep up with her friends; She planned on learning how to swim, cross stitch, and walk again.

Alex was a girl with her own dreams – She wanted to be a world traveler and she dreamed of going to the Grand Canyon and to Paris. She dreamed of attending college but living in an apartment so she could have as many pets as she wanted; she promised her brother Eddie that, even though she wouldn’t let him live with her when they grew up as he suggested, he could visit as much as he wanted as long as he called first. She wanted to marry her prince charming and have a family, she even put her plans of becoming an astronaut on hold because she thought she would miss her kids too much on her long trips to outer space.

Alex was a girl who dreamed for others – She believed that she could make a difference for kids with cancer by selling lemonade. She knew that, with the help of others, she could raise a million dollars for the cause. She dreamed that one day there would be a cure for all children with cancer.

Alex was an inspiration – Her bravery and composure throughout her life inspired all of us to be stronger, better people. Her efforts to raise money and awareness for childhood cancer, while she fought so terribly against her own cancer, inspired all of us to help her cause. Her love of life inspired all of us to love our lives.

Alex was loved. Loved by us. Loved by her brothers, Patrick, Eddie, and Joey. Loved by her Grandparents. Loved by her Aunts, Uncles, and Cousins. Loved by her friends. Loved by her Doctors and Nurses. Loved by people everywhere who were inspired by her will to live.

So many times, we have heard people say that Alex “lost her battle with cancer.” We believe that this could not be farther from the truth. Alex won her battle in so many ways…by facing her cancer everyday but still managing to smile; by making the most of every moment; by never giving up hope; by living life to the fullest; and by leaving an incredible legacy of hope and inspiration for all of us.

We are proud of her; We love her; We are grateful for her life; We miss her everyday.

- Liz and Jay Scott, Alex's Parents

Big World ... Small Community

2009-08-21T08:54:00.000-05:00

We recently shared a wonderful dinner with Hannah Asman and her family who have traveled from Johannesburg, South Africa to see Dr. McClain at Texas Childrens' Hospital. Hannah is a beautiful young girl who has been battling LCH for 6 years. Hannah will undergo tests and scans on Monday and then meet with Dr. McClain. Her parents (Sara and Richard) are hoping that Dr. McClain will be able to provide some input on her treatment.

You can read more about Hannah's story on her CarePages site: http://www.carepages.com/carepages/hannahasman

The dinner was organized by Don and Donna Johnson whose son Logan is a LCH survivor. Thanks to the Johnsons for being such a wonderful resource for all histio families and reaching out to families visiting Houston to see Dr. McClain.

You can connect with the Johnsons through their website -- www.nottheactor.com

Histio Heroes and Angels

2009-08-14T10:01:00.005-05:00

We wanted to highlight several recent stories about brave children and adults who are battling against histiocytosis:

Declan Bennett
Transplant Will Change His Life

Matthew Gouwens
Family Holds On

Ally Jarkiewicz
Jarkiewicz Family Spirit Night

Christy Szabocsik Jarosz
Bowling To Aid Young Woman's Cancer Fight

Evrett Murphy
Baby Evrett To Undergo Stem Cell Transplant

Callie Pappas
Camp gives Callie 'New Hope'

We also wanted to take a moment to remember and recognize several brave warriors who recently lost their battles against histiocytosis:

Abigail Buckner (2 1/2 years old -- HLH)

Jared Scott Eggemeyer (17 years old -- HLH)

Jacob Kelly Ryan (10 years old -- HLH)

Click on the story titles to read more about these brave children and adults. Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

Mystery Diagnosis -- Brooke Rohrer

2009-08-14T09:59:00.000-05:00

Discovery Health’s popular show MYSTERY DIAGNOSIS will spotlight an Oregon native this August. As part of the continuation of the series’ seventh season, Julie and Todd Rohrer from Portland will share their daughter Brooke’s riveting story with audiences across the nation. Premiering on Monday, August 17 at 10 PM ET/PT, Brooke’s story will take viewers on a roller coaster ride of emotions as the Rohrer’s endure misdiagnoses and dismissals before ever finding a solution.

Brooke was born a happy and healthy baby girl in 2004. During the early years, she was considered energetic, sassy and excitable—but in the spring of 2007, Brooke began to complain about pain in her right hip and began walking strangely, like a much older person. Concerned, the Rohrers take Brooke to several different pediatricians, but none of the doctors can find anything wrong with her and believe she is simply experiencing “growing pains.” Despite the lack of additional symptoms, signs or irritations, Brooke’s intense pain persisted.

Ultimately, an MRI reveals that part of Brooke’s vertebrae had disintegrated—and after a biopsy is conducted, she is diagnosed with Langerhans Cell Histiocytosis (LCH), a rare blood disorder caused by an abnormality in a histiocyte, a type of white blood cell. With LCH patients, histiocytes become overactive and destroy the bodies own healthy tissues and organs. Unfortunately, the cause of LCH—which is found in 3 to 5 per million children—is unknown at this time.

Through chemotherapy, doctors were able to eliminate the disease, and Brooke has been given an 80% chance of survival. Because it is possible for LCH to return, she is being re-evaluated every three months. Today, Brooke is thriving, living the life of a normal little girl without any physical restrictions. She is taking swimming lessons and is as energetic as ever.

NCHD Reactions

2009-08-14T09:58:00.011-05:00

Colleen Cagney-Osbourn attended the National Conference on Histiocytic Disorders and shared her experiences:

Last night we had the reception and were able to meet a lot of the families I have followed on caringbridge.com It was neat to have someone sit down with you and recognize their children before them. I have met two more families with jaw LCH and our stories are almost identical. Jeff Toughill says their are about 200 families here.

To sit in a room full of people who really understand is a gift....

Heather Wolf provided this update:

We are learning a ton about histio & meeting wonderful families at the National Histiocytosis Conference here in Wisconsin. Can you believe that we are the only family here with Rosai Dorfman Histio! That is how rare Sawyer's disease is, even in the histio world! Honestly, a little lonely feeling ;)

Being in a room with other understanding families is a sheer gift!

Sue Nazarchuk just checked in with additional thoughts:

Convention just ended. Wow. My mind is mush! I think its time for a drink! What an awesome weekend! Incredible speakers and wonderful friends!

Colleen Cagney-Osbourn:

... so glad to have met some families who have the same struggle. I am not alone!

National Conference on Histiocytic Disorders

2009-07-31T09:43:00.011-05:00

A place to learn ... a place to connect ... a place to explore.

When: August 1 and August 2
Where: Milwaukee City Center, Milwaukee, WI

The National Conference on Histiocytic Disorders is being held in Milwaukee, Wisconsin this weekend (August 1-2), featuring presentations from leading physicians on research and treatment of histiocytic disorders. The weekend also will provide numerous opportunities for patient and families to meet and share stories about their experiences with histiocytosis.

We have attached a copy of the meeting agenda and look forward to everyone who attends sharing information and stories from this wonderful conference.

Parade Of Ponds

2009-07-31T09:24:00.001-05:00

Benifiting Connor's House

When: August 1 and August 2
Where: Morris, Essex and Passaic Counties, New Jersey

The third annual "Parade of Ponds" will give participants a sneak peek of more than 25 private paradises at homes and businesses throughout Morris, Essex and Passaic counties.

Upon purchase, participants will receive a tour booklet that includes the addresses of two tour starting locations, along with a map of all the stops. All proceeds from the sale of tickets, which can be purchased at Walpole Woodworkers, 540 Tabor Road, Morris Plains, go toward Connor's House.

A s 8 1/2-year-old Connor Scott Millard neared the end of his lifelong battle with mitochondrial disease nearly two years ago, all he kept asking his parents to do was bring him home from the hospital and back to "Connor's house."

Connor's House, a nonprofit organization co-founded by Connor's "mama" and "papa," Deb and Scott Millard, along with his doctor, Arun Chopra M.D., in honor of the spirited little boy. The organization is dedicated to supporting children with complex health care needs such as Connor's, and ensuring that these children will have a soothing, comfortable environment in which to receive treatment.

Inspired By A Child Golf Tournament

2009-07-31T09:23:00.007-05:00

Benefiting the Histiocytosis Association of America

What: Four Person Scramble
When: Saturday, August 1, 2009 at 8:30 a.m.
Where: Cedar Creek Golf Course, Albertville, MN

A great golf tournament organized by 8 histio families in the Minneapolis/St. Paul area to raise money for histiocytosis research. Please read below for the story of each child who inspired this golf tournament.

Hike For A Cure -- Sophia's Story

2009-07-31T09:22:00.004-05:00

Sophia Colby is an amazing 5 year old little girl who has bravely battled against HLH for most of her life. Her family created a video about why they participate in Hike For A Cure and why you should consider supporting this great event.

In August of 2005, Sophia developed a fever. After a week of being seen by every specialists, Sophia's parents sat down for a family conference with an oncologist who said "We think your daughter has Hemophagocytic Lymphohistiocytosis (HLH) and we know she is dying."

Eight weeks of chemo, steroids, immuno-surpressants and many other supportive meds. Genetic testing was negative. Sophia's counts never truly normalized, there was always smoldering disease activity. March of 2006 she underwent Bone Marrow Transplant, with her father as her donor. May of 2006 battled a massive case of septic shock.

She continues to deal with this disease and its effects to this day, but does so with a smile and strength that inspires everyone who meets this amazing little girl.

Lance's Promise

2009-07-31T09:21:00.000-05:00

At a conference last September in New York City, Lance Armstrong shared his reason for making his comeback to professional cycling.

"We have the information, technology and medicine to save lives, but we do not apply that in the United States. As long as we do that, it is a moral and ethical failure."

It’s all about making cancer a global health priority. It’s about the millions of people effected every year. It’s about what he can do to spread awareness by riding his bike again and sharing the Livestrong message everywhere he goes. And it’s about you.

Histio Heroes In The News

2009-07-23T09:42:00.004-05:00

We wanted to highlight several recent stories about brave children who are battling against histiocytosis as well as acknowledging some histio survivors:

Gabriel Chavez
Summer Paint World Show Full Of Memorable Firsts

Bryson Fanning
Outpouring Of Support Helps Family Along Road To Recovery

Jacob Price
Fight For His Life

Emily Quick
Barbers 4 ... For Emily

Eliot Wood
Fayetteville Family Reflects On Trials, Victories Following Son's Rare Blood Disease

Click on the story titles to read more about these brave children and young adults. Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

Wheels North Fundraising Ride

2009-07-21T11:36:00.005-05:00

Congratulations to the Wheels North riders, crew and supporters. Check out the last day video and a few brief stats:

Departed Santa Rosa, CA, at 9:30 am on July 4
Arrived at Drumheller Fountain in Seattle, WA at 6 pm on July 16 (exactly on schedule!)
Rode 1,120 miles (some riders who got lost along the way rode a little more)
Climbed 53,110 feet

Most importantly, Wheels North raised $57,870 for histiocytosis research!!!!

Giving Back and Looking Ahead

2009-07-15T14:17:00.008-05:00

Over the past seven years, the Sydney Salem Golding Fund has been privileged to have received support for our efforts from so many wonderful people whose kindness, generosity and willingness to help never ceases to amaze and inspire.

You have consistently and unselfishly given your advice, support, time and money (for which we are so grateful) to help us in trying to make a difference for other children and families battling histiocytosis, neonatal disease and pediatric cancer.

This past year already has seen one of our goals realized with the opening of the new Quentin & Elisabeth Alexander Neonatal Intensive Care Unit. We cannot thank everyone for allowing the Sydney Salem Golding Fund to be part of making this world-class NICU a reality and helping so many tiny little warriors receive the specialized care that they deserve.

Due to your generous support, we have realized two other goals in supporting histiocytosis research and pediatric cancer care.

The Sydney Salem Golding Fund has committed to make a major gift to Rainbow Babies & Children's Hospital which will include:

A lead gift for construction of the new Outpatient Pediatric Cancer Center at Rainbow Babies/Ireland Cancer Center.

Creating the Sydney Salem Golding Histiocytosis Translational Research Fund to support cutting-edge research into more effective and less harmful treatments for histiocytosis.

These goals would never have been realized without your support. Your efforts have made a difference and will continue to improve the lives of many children battling histiocytosis, neonatal disease and pediatric cancer. We are proud and honored to know you as friends and supporters.

In the future, our fundraising efforts will directed towards the Histiocytosis Association of America and our new partnership with the Texas Children's Cancer Center, as well as continuing to raise awareness about histiocytosis and pediatric cancer through the SSGF Blog.

We are so greatful for your help so far and look forward to your continued support in the years to come.

THANK YOU!!!

Finding A Cure -- Histiocytosis Association of America

2009-07-15T13:47:00.006-05:00

A great video about the search for a cure and the experiences of families and patients battling against histiocytic disorders.

As another histio parent wrote in his blog, "the opening line 'I think it's very difficult to be the parent of a child with a life threatening illness' just might win the understatement of the year award."

Histiocytosis affects 1 in 200,000 children born each year in the

United States

. Because this illness is so rare, there is little research into its cause and treatment. It is often referred to as an "orphan disease," striking too few people to generate government-supported research.

You can help in the fight against histiocytosis by taking a moment (actually 7 minutes) to watch this video and then sharing with family, friends and co-workers.

Post it on your blog or Facebook page, email it to friends and help spread the word!

Histio Kids Slide Show

2009-07-09T11:24:00.005-05:00

We wanted to share a slide show of children with histiocytosis to help put a face on a disease that can be hard to understand. Each child has his or her own story to tell about their battle with this terrible disease.

Some histio kids have won their battle, other brave warriors continue their fight and too many precious angels have left us far too soon.

You can honor these children by supporting the Histiocytosis Association of America through donating, supporting awareness/fundraising events or just taking a moment to learn more about this disease.

Hike For A Cure -- Portland Reception

2009-07-09T10:57:00.004-05:00

When: Monday, July 13, 2009
Time: 6pm - 8:30pm
Where: Bridgeport Brew Pub and Bakery, Portland, Oregon

Hike For A Cure is a challenging, fund-raising event held each year in Yosemite, California. To honor children and adults affected with histiocytosis, hikers hike to the top of Half-Dome. In 2008, hikers and families, with the help of sponsors, raised over $230,000!

You will learn how you can participate in the 9th annual Hike For a Cure fundraising event in September of 2009. Whether you want to hike, support a hiker, or volunteer your services, you are urged to attend the H4AC reception to find out the best way that you can be a part of the fabulous H4AC. Come to meet new people and enjoy an informational fun filled evening.

You also can meet riders from the Wheels North fundraising event (a two week bicycle ride for histio), including Eric Norris (Wheels North coordinator) and Dr. Ken McClain (Wheels North rider and histio expert). Dr. McClain will talk about the latest in histio research and treatment.

The Sydney Salem Golding Fund invites everyone to join us or make a donation to support our team -- Hiking For Histio Heroes -- in the battle against histiocytosis. You can learn more about H4AC and how to register or make a donation on the Hike For A Cure website.

2 Run...2 Walk...2 Fund...a Cure

2009-07-09T10:43:00.004-05:00

What: 5K Run and 1 Mile Run/Walk
When: Saturday, July 11, 2009 at 8:30 a.m.
Where: 28500 Clemens Road, Westlake, Ohio 44145

The Prayers from Maria Foundation funds research into the causes, prevention, treatments, and cure for childhood brain tumors known as gliomas; raises public awareness and brings hope to children and their families who deal with the hardships of this disease.

Diffuse intrinsic pontine glioma (DIPG) is an inoperable incurable brain tumor that strikes children usually between the ages of 5 and 11. DIPG accounts for almost 45% of all tumors and are the second highest cause of cancer deaths among young people. A child with this diagnosis is given a 10 to 12 month life expectancy. 85-95% of children who are diagnosed with gliomas die within five years.

This is unacceptable.

You can learn more about this event and the Prayers from Maria Foundation on their website – www.prayersfrommaria.org.

Rainbow Babies Rankings

2009-07-01T09:49:00.004-05:00

We are very excited to report that Rainbow Babies & Children's Hospital has been recognized in two recent magazine surveys of the best children's hospitals and pediatric specialty programs in the United States.

Child Magazine ranked Rainbow Babies as one of the 10 Best Children's Hospitals in the country and ranked Neonatal Care as the second best program in the country and has been ranked among the top five programs for the fourth consecutive survey (2003, 2005, 2007 & 2009).

U.S. News & World Report also ranked Neonatal Care as the number two program in the country.

These rankings will only improve with the opening of the brand-new Quentin & Elisabeth Alexander Neonatal Intensive Care Unit that provides the latest technology and clinical services in a home-like environment where patients have private space and parents are able to sleep at their child's bedside. The new unit expands the NICU from 8,000 square feet to 30,000 square feet and also features the first surgical operating table developed for preemies and newborns -- designed by Rainbow staff.

Your kindness and generosity over the past seven years has enabled the Sydney Salem Golding Fund to support the development of the neonatology and pediatric cancer programs at Rainbow Babies and Children's Hospital -- which touched Sydney's life and the lives of so many other children -- and to provide assistance to the children and families being served by those programs.

all jacked up

2009-06-30T14:46:00.009-05:00

Benefiting The Histiocytosis Association Of America And Honoring Jack "The Rock" Rubin

What: Charity Open Bar
When: Thursday, July 9 (7p-10p)
Where: Marquee, 289 10th Ave., New York, NY 10001

Jack Morris Rubin was born on Aug. 09, 2007. He lives in Springfield, New Jersey with his parents, Kristy and Chad, and his dog Gooch. On October 17, 2007, he was initially diagnosed with a Langerhans Cell Histiocytosis (LCH) and subsequently was diagnosed with secondary Hemophagocytic Lymphohistiocytosis (HLH) in his spleen and bone marrow.

Jack spent 1 year, 7 months, 17 days at Childrens Hospital of Philadelphia (CHOP) before finally released last month. He endured dozens of different chemotherapy regiments, a splenectomy, respiratory failures, spent four months total on a ventilator, had bone marrow transplants and over 600 platelet and blood infusions.

Jack is very happy to be living at home with his parents in New Jersey and is looking forward to the party at Marquee so that he can help raise money to fight histiocytosis.

Click here to purchase tickets or make a donation to the Histiocytosis Association of America.

Wheels North

2009-06-30T14:34:00.007-05:00

Start Time:	Saturday, July 4, 2009 at 9:00am
End Time:	Friday, July 17, 2009 at 10:00am
Location:	Santa Rosa, CA, to Seattle, WA

Wheels North is a 1,000-mile bicycle ride from Santa Rosa, CA, to Seattle, WA, to raise funds to help find a cure for histiocytosis.

One of the volunteers, Kim Hanlin, lost her grandchild, Tucker, to histiocytosis and has shared a video memory book celebrating Tucker's life.

Visit the web site at www.wheelsnorth.org for more info about how you can donate and support this ride against histiocytosis.

2nd Annual Smiles For Sophie Forever Birthday Bash and Dash

2009-06-30T14:21:00.005-05:00

What: 5K and 1 Mile Run/Walk
When: Saturday, July 4, 2009 at 9:00 a.m.
Where: Walker Road Park, 31621 Walker Road, Avon Lake, OH 44012

Welcome to the 2nd Annual Birthday Bash and Dash! You are invited to begin celebrating your freedom on the Fourth of July by helping to realize the possibility of one day celebrating every child's freedom from pediatric brain cancer.

In February of 2007, Sophie Elizabeth Quayle, at age three, was diagnosed with a diffuse intrinsic pontine glioma (DIPG) - a cancerous brain tumor. This type of tumor is located in the brainstem, at the base of the brain. Affecting primarily children, it is the rarest and worst of pediatric brain tumors. Approximately 150 to 200 children are diagnosed each year. This type of tumor is considered terminal, and survival time is typically nine to twelve months following diagnosis. Sophie passed away October 6, 2007, just seven and a half months after diagnosis.

Sophie's parents, Marc and Emily Quayle, started Smiles For Sophie Forever to help children and families suffering from DIPG, while raising awareness and money that will lead to a cure for this awful disease and other types of pediatric brain cancer.

Click here to learn about Sophie, read more about this great event and find how you can support Smiles for Sophie Forever in the battle against pediatric brain tumors.

Histio Headlines

2009-06-30T13:26:00.000-05:00

We also want to highlight several recent stories about brave children who are battling against histiocytosis as well as acknowledging some histio survivors:

Kelly Engelken
Woman Celebrates Remission

Vivian Kowkabanys
Chick-fil-A Helps Family With Medical Bills

Caleb Pape
Make-A-Wish Gives Edmond Boy Best Birthday Present

Landon Rogers
Children's Miracle Network Champion Child

Tyler Zimmerman
Tyler’s Wish To Watch Phoenix Mars Lander Touch Down

Be The Match: Andrew and Matthew's Story

2009-06-19T09:22:00.002-05:00

Every new mom and dad believes that their child is “one-in-a-million,” but for the Akin family of suburban St. Louis, that designation for baby Andrew was devastating.

When he was about 10 weeks old, Andrew’s mom, Kristin, noticed that though he wasn’t acting sick, he was spitting up every other bottle. She thought it was the wrong kind of formula, until one morning he woke up jaundiced head to toe.

She took him to the doctor, and within 24 hours, Kristin and her husband, Justin, were told that their beautiful little boy was in liver failure and had less than a 50% chance of survival. The family spent agonizing hours and days with doctors, trying to find out what was wrong with Andrew.

Finally, he was diagnosed with a rare immune system disorder called hemophagocytic lymphohistiocytosis (HLH). HLH affects one out of every million children. The good news is that HLH can be cured with a bone marrow transplant.

Since his diagnosis, Andrew has undergone three bone marrow transplants, the last one in March 2009. Andrew is doing well today after his third transplant.

However, Andrew’s parents learned that Andrew's older brother Matthew also carries the same rare genetic mutation that caused Andrew’s HLH. Even though Matthew is doing fine so far, he also needs a bone marrow transplant, because the disease could begin to affect him at any time. It was hard for Kristin and Justin to make the decision to go forward with a transplant for Matthew, who is outwardly a perfectly healthy, vibrant four-year-old. But a matching donor has been found and they are planning Matthew's transplant to take place this summer.

Despite all they have been through, the Akins remain strong and optimistic that they will beat this disease, and they continue to spread the word about the enormous need both for donors and for contributions to support Be The Match.

Play For A Cure

2009-06-19T09:12:00.009-05:00

Play for a Cure began as an idea one day in 1998 when a group of friends and family members were together celebrating Andrew Harris' third birthday, and it has turned into a labor of love.

Andrew was born with Hemophagocytic Lymphohistiocytosis (HLH), a rare and usually fatal form of histiocytosis. He has undergone chemotherapy, radiation, and three bone marrow transplants. In addition to his treatment, his family has had to deal with the loss of two other children who succumbed to this disease.

Through Andrew's battles with HLH, numerous complications, chemotherapy and radiation treatments and surgeries, Andrew has many daily challenges, but despite his challenges, Andrew truly embraces everyday life.

Play For A Cure raises funds and awareness in the fight against histiocytosis. Since the disease affects less than 200,000 children per year in the United States, it is considered an "orphan disease", and does not receive federal funding for research.

REACH THE DAY 2009

2009-06-19T08:59:00.005-05:00

In 2008, Congress passed The Caroline Pryce Walker Conquer Childhood Cancer Act, landmark legislation that holds the promise of $30 million dedicated to childhood cancer research. We have come a great distance but we won’t stop – not until every child with cancer can be guaranteed a cure.

REACH THE DAY 2009 is our opportunity to make sure that this bill gets fully funded and that childhood cancer research continues to receive Congressional appropriations. For the ninth year in a row, parents, patients, survivors and others touched by childhood cancer are invited to come to Washington, DC on June 22-23, 2009. The event provides an opportunity for those who care about children with cancer, to share their story with our nation’s leaders, and to impress upon them that critical funding for childhood cancer research is needed.

We need to speak for the 12,500 children who will be diagnosed with cancer this year, and all who will be in the years to come. We need to speak for the more than a quarter of a million children in the United States who are now living with cancer, many of whom suffer from long-term, side-effects of their therapies because we have not yet found better ways to cure them.

And most of all, we speak for all those children who live forever in our hearts.

Histio Heroes and Angels

2009-06-11T09:44:00.006-05:00

We want to highlight several recent stories about brave children battling against histiocytosis and other life-threatening diseases who are awaiting a life-saving bone marrow transplant:

Andrew Akin
Family Celebrates A Special Birthday

Kenna Emmons
Bone Marrow Donor Needed

Emmanuel Gonzalez
2 Year Old Could Require Transplant

Liam Schulze
Shoppers, Baggers Line Up To Aid Child

We also wanted to take a moment to remember and recognize several brave angels who have lost their fights against histiocytosis over the past several months:

Karleigh Marie Hobart (10 months old -- HLH)

Marion Isabella Sumner (1 month old -- LCH)

Zachary Malik Tyler (13 years old -- LCH)

Aiden Brian Willis (3 years old -- HLH)

We are deeply sorry and send our condolences to the families of these children.

Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website. You can also learn about how to register as a bone marrow donor on the National Marrow Donor Program website.

Be The Match Marrowthon (June 8-22)

2009-06-08T13:54:00.004-05:00

From June 8-22, the Be The Match Marrowthon seeks to add 46,000 new members to the registry and raise funds for the Be The Match Foundation. The normal $100 registration fee is waived for the first 46,000 new members. Joining the registry is as easy as filling out a health questionnaire and swabbing the inside of your cheek with a cotton swab.

Anyone between the ages of 18 and 60, in good health and willing to help any patient in need can join in person at one of many community drives taking place across the country or online at www.marrow.org to find how to register to become a bone marrow donor.

You can help save a life!!!

Five Star Sensation (June 13)

2009-06-08T13:37:00.016-05:00

Five Star Sensation is a major biennial benefit for University Hospitals Ireland Cancer Center. Led by Honorary Chair Chef Wolfgang Puck, this culinary extravaganza is one of Cleveland's most unique benefits and, since 1987, has raised more than $9 million for Ireland Cancer Center's patient education and information, community cancer screening, survivorship, music therapy and clinical trials programs.

The 2009 Five Star Sensation will be held on Saturday, June 13, 2009 at the site of the Ahuja Medical Center in Beachwood. Under a luminous outdoor tent, patrons will sample the finest delicacies prepared by chefs from across the continental United States, as well as Hawaii, Japan and Singapore. To complement the chefs’ cuisine, select wines from premier domestic and international vintners will be featured at the event.

Flying Horse Farms Groundbreaking (June 13)

2009-05-22T10:15:00.003-05:00

Flying Horse Farms is a camp for children with serious illnesses located on nearly 200 acres of gently rolling hills in Mt. Gilead, Ohio. Summer programs will serve 120 kids per week during week-long sessions. There will also be family camps for 150 children and families per session. Up to 2,500 children and families will be served per year.

There will be no cost for children or their families to attend camp.

Children who attend Flying Horse Farms will experience camp like an ordinary child. For one magical week, they will step outside of their sickness to experience activities such as canoeing, swimming, horseback riding, arts & crafts, and singing songs around a fire.

They will stay in a cabin with other campers and eat their meals in the mess hall. They will stay up late singing songs and whispering secrets. If they need any medical care or treatment, they will be treated by professional medical staff at the on-site health center.

When kids come to Flying Horse Farms, they will not be kids with cancer or other life-threatening diseases. They will not be patients. They will not be different.

They will just be kids.

Kick It: Play Kick Ball: Fight Pediatric Cancer

2009-05-22T10:13:00.001-05:00

Kick It: Facing Cancer, Finding Cures is a national grassroots fundraising effort with a simple concept: play kickball to unite communities in the fight against pediatric cancer. Kick It is made possible through Flashes of Hope, a national nonprofit organization that changes the way children with cancer see themselves through the gift of photography.

More than 12,000 children are diagnosed with cancer each year in the United States and research is critical to saving more lives. Kick It is a wonderful and easy way to get involved in the cause, whether the games are held in backyards with a handful of players or as community events with hundreds of people.

Funds raised from Kick It events will directly help children with cancer and their doctors:

50% will be donated to the Children's Tumor Foundation and CureSearch, to fund research at the Children's Oncology Group (COG).
50% will be donated to Flashes of Hope in support of its mission to provide free portraits to children with cancer. Photo shoots are held in 39 hospitals and at 8 summer camps across the country.

Events are being held on Sunday, June 7 in Chagrin Falls, Ohio, Houston, Texas and Washington, D.C. (see Upcoming Events), along with other cities throughout the summer. Organize a game, join a team, or support a event to help kick pediatric cancer.

Hike For A Cure Reception

2009-05-22T10:12:00.000-05:00

When: Saturday, June 6, 2009
Time: 6pm - 8:30pm
Where: Lucille Packard Children's Hospital, Palo Alto, California

Organized by Ron and Colleen McPeek-Bechtold, Hike For A Cure is a challenging, fund-raising event held each year in Yosemite, California. In honor of the many children and adults affected with histiocytosis, hikers hike to the top of Half-Dome. Since the first hike up to the top of Half Dome in 2001, hikers and families, with the help of sponsors raised over an amazing $900,000 for the Histiocytosis Association of America (HAA).

You are invited to an Informational Night where returning hikers (or new hikers) can bring family & friends to come and learn about the hike and why we hike. The night will include a slide show presentation about the Hike, a review of the fund raising results from past years, and information on research that has been funded through the HAA as a result of money raised from past Hikes.

You also can learn more about the Hike and how to register or make a donation on the Hike For A Cure website.

The Sydney Salem Golding Fund plans to participate again this year (September 27) and invites everyone to join us or make a donation to support our team in the battle against histiocytosis.

Against All Odds: William's Wish

2009-05-22T10:11:00.003-05:00

William Flaherty is a little boy from Cincinnati, Ohio, who underwent successful treatment for hemophagocytic lymphohistiocytosis (HLH) last year at Cincinnati Children's Hospital. William needed a bone marrow transplant which he was able to receive from his brother on April 10, 2008. William is now doing well and is receiving a wish for him and his family from the Make-A-Wish Foundation.

Please take a moment to watch his story.

Histio Headlines

2009-05-22T10:09:00.006-05:00

The Histiocytosis Association of America held its 20th Anniversary Dinner in New York City last week and raised $250,000 for research programs. Every dollar brings us closer to better treatments and turning "imagine a cure" into reality.

We also want to highlight several recent stories about brave children and young adults in the United States, England and Scotland battling against histiocytosis:

Andrew Akin
Local Shop Owner Celebrates Grandson’s Birthday, Raises Awareness for HLH Disease

Maddie Barrett
'Miracle Maddie': Bend Gate Youth's Fight For Life An Inspiration

Rachel Blair
Cancer Patients Given Style Boost

Robbie Lee
Father's Special Reason To Help Candlelighters

Jack Rubin
Toddler Finally Leaves Philadelphia Hospital For Home

Liam Schulze
Springs Toddler Fights Life-Threatening Disease

Tyler Tobin
Fundraiser To Assist Toddler With Disease

Click on the story titles to read more about these brave children and young adults. Learn how you can help in the fight against histiocytosis and find more information on the Histiocytosis Association of America website.

A Celebration of Real Miracles -- CMN Telethon

2009-05-22T10:00:00.001-05:00

“A Celebration of Real Miracles” will air May 29 - 31 in cities across North America to raise awareness about Children’s Miracle Network hospitals and to share stories of medical miracles and the people who make them possible at these hospitals. Each broadcast will also feature local programming that tells the stories of children who have been treated at their Children’s Miracle Network hospital.

Children’s Miracle Network (CMN) is a non-profit organization that raises funds for more than 170 children’s hospitals. Its mission is to generate funds and awareness programs in partnership with and for the benefit of member hospitals/foundations and the children they are privileged to serve. Through its continuous efforts to help kids, CMN has raised more than $3.4 billion to date, most of which is donated a dollar or two at a time by caring individuals.

Please check your local TV listings for specific dates and times of the CMN broadcast.

YTAC 4th Annual Spring BBQ & Silent Auction

2009-05-22T09:13:00.000-05:00

What: Fundraiser/Membership Drive
When: Saturday, May 30, 2009 (Noon - 5p)
Where: Armadillo Palace, 5015 Kirby Drive, Houston, TX 77005

Young Texans Against Cancer will host their 5th Annual Spring BBQ & Membership Drive on Saturday, May 30th to raise funds which will support cancer research in the Houston community. This year’s event will feature (in true Texas style) live country music, BBQ, a unique silent auction and a wonderful opportunity to celebrate the organization’s commitment to make a difference.

100% of the net proceeds will be directed to YTAC’s annual donation for 2010 -- the Stehlin Foundation for Cancer Research . Please join YTAC in making a difference in our community.