Rare Disease Day 2010

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

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

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

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

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

 

New HHRF Video

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.