tag:blogger.com,1999:blog-1669489799414274142024-03-13T21:37:14.157-05:00Sydney Salem Golding Fund BlogUpdates on awareness, educational and fund raising efforts supporting histiocytosis, pediatric cancer and neonatal diseaseSydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.comBlogger130125tag:blogger.com,1999:blog-166948979941427414.post-68431427359658538392010-02-28T06:13:00.005-06:002010-02-28T06:20:40.504-06:00Rare Disease Day 2010<div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size:small;">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.</span></span></div><span class="Apple-style-span" style="color: rgb(102, 102, 102); "><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></span></div><span class="Apple-style-span" style="font-family:georgia;"><div style="text-align: justify;"><span class="Apple-style-span"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">Some facts from NORD about rare diseases:</span></span></span></div><span class="Apple-style-span" style="font-size:medium;"><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">• <span class="Apple-tab-span" style="white-space:pre"> </span>A rare or "orphan" disease affects fewer than 200,000 people in the United States.</span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">• <span class="Apple-tab-span" style="white-space:pre"> </span>There are more than 6,000 rare diseases.</span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">• <span class="Apple-tab-span" style="white-space:pre"> </span>Approximately 30 million Americans (about 10%) are affected by a rare disease. </span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">We all come together on Rare Disease Day to:</span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">• <span class="Apple-tab-span" style="white-space:pre"> </span>Raise awareness about rare disease</span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">• <span class="Apple-tab-span" style="white-space:pre"> </span>Champion research efforts toward development of new treatments</span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">• <span class="Apple-tab-span" style="white-space:pre"> </span>Support provision of resources for patients and families</span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">Together we can make a difference. </span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">Alone we are rare. Together we are strong.</span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">Take action Now: </span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">Write Your Governor</span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;"><a href="http://www.rarediseaseday.us/rdd/take-action/write-your-governor/">http://www.rarediseaseday.us/rdd/take-action/write-your-governor/</a></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;">Become a Partner</span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color:#000000;"><span class="Apple-style-span" style="font-size:small;"><a href="http://rarediseaseday.us/rdd/take-action/become-a-partner/">http://rarediseaseday.us/rdd/take-action/become-a-partner/</a></span></span></div></span></span></span>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-31019636476903083862010-02-23T16:56:00.007-06:002010-02-28T06:02:34.955-06:00HLH Research Grants<div style="text-align: justify;"><span class="Apple-style-span" style=" color: rgb(51, 51, 51); "><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;">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.</span></span></span></div><span class="Apple-style-span" style=" color: rgb(51, 51, 51); font-size:13px;"><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;">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. </span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;">To test this hypothesis, the research will pursue the following specific aims: </span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;">1.) Define how antigen handling and presentation differ between WT and prf DC subsets after LCMV infection.</span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;">2.) Determine whether CD8+ T cells are the principle cell type that suppresses DC stimulatory function via a perforin-dependant mechanism. </span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;">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.</span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;">You can read more about the grants and the research at the following link:</span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;"><br /></span></span></div><div style="text-align: justify;"><span class="Apple-style-span" style="color: rgb(51, 51, 51); "><a href="http://projectreporter.nih.gov/reporter_searchresults.cfm?&new=1&icde=2287115&loc=2&CFID=22616993&CFTOKEN=82756898"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;">http://projectreporter.nih.gov/reporter_searchresults.cfm?&new=1&icde=2287115&loc=2&CFID=22616993&CFTOKEN=82756898</span></span></a></span></div></span>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-77590856127268623152010-02-23T16:02:00.000-06:002010-02-23T17:04:30.454-06:00Invitation to Participate in TCCC Histiocytosis Research Program<div style="text-align: justify;"><b><br /></b></div><div style="text-align: justify;"><b>The Histio Heroes Research Fund</b> 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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>What does this research involve?</b></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>What is needed for this research?</b> </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b><i>Surgical biopsies.</i></b><i></i> 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. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b><i>Blood samples.</i></b><i></i> 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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b><i>Cerebrospinal fluid.</i></b><i></i> 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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b><i>Medical information.</i></b><i></i> Medical details associated with the biology samples will help determine the clinical significance the genes, proteins and cells identified in the Histiocytosis research studies.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>How can I participate in this research?</b> </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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). </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>Please contact us if you are interested or if you and/or your physicians have other questions about the Histiocytosis Research Program.</b></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">Kenneth McClain M.D., Ph.D. (klmcclai@txccc.org)</div><div style="text-align: justify;">(832) 822-4208</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">Carl Allen M.D., Ph.D. (ceallen@txccc.org)</div><div style="text-align: justify;">(832) 824-4312</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>Mailing address:</b></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">TXCCC Histiocytosis Lab</div><div style="text-align: justify;">Texas Children's Hospital/Feigin Center</div><div style="text-align: justify;">Rm C1070.01L</div><div style="text-align: justify;">1102 Bates Street</div><div style="text-align: justify;">Houston, Texas 77030</div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-91466942682228489652010-02-15T05:33:00.007-06:002010-02-23T17:36:27.398-06:00Histio Heroes In The News<div style="text-align: justify; ">We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis:<br /></div><div style="text-align: justify; "><br /></div><div style="text-align: justify; "><b>Logan Craig</b></div><div style="text-align: justify; "><b></b><i><a href="http://journalstar.com/news/local/article_733ac7d6-169e-11df-bd80-001cc4c03286.html">Seward Youth Football Players Huddle To Help One Of Their Own</a></i></div><div style="text-align: justify; "><br /></div><div style="text-align: justify; "><span style="font-weight: bold; ">Eric Hauser</span><br /><i><a href="http://www.myfoxny.com/dpp/community/give_miracles/caitlin-and-eric-thomas-hauser">Sister Gives Her Brother A Miracle</a></i><br /><b><br /></b><span style="font-weight: bold; ">Sydney Martin </span></div><div style="text-align: justify; "><span style="font-weight: bold; "></span><a href="http://www.pioneerlocal.com/wilmette/news/2038210,wilmette-bedroom-021110-s1.article"><i>Make-A-Wish Makes Dream Bedroom For 12 Year Old</i></a><i><br /></i><span style="font-weight: bold; "><br /><span style="font-weight: bold; ">Natalie Matheson </span></span></div><div style="text-align: justify; "><span style="font-weight: bold; "><span><span class="Apple-style-span" style="font-weight: normal;"><i><a href="http://hills-shire-times.whereilive.com.au/news/story/winston-hills-shoppers-to-help-children-with-cancer/">Winston Hills Shoppers To Help Kids With Cancer</a></i></span></span><span><br /><span class="Apple-style-span" style="font-weight: normal;"><i><br /></i></span></span></span></div><div style="text-align: justify; "><b>Zali</b></div><div style="text-align: justify; "><b><span class="Apple-style-span" style="font-weight: normal;"><i><a href="http://www.thecoastnews.com.au/central-coast/560-central-coast-toddler-poster-girl-for-bandaged-bear-day.html">Central Coast Toddler Poster Girl For Bandaged Bear Day</a></i></span></b><span class="Apple-style-span" style="font-weight: normal; "><i><br /></i></span></div><div style="text-align: justify; "><span class="Apple-style-span" style="font-weight: normal; "><i><br /></i></span></div><div style="text-align: justify; "><span></span></div><div style="text-align: justify; ">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 <b><a href="http://www.facebook.com/profile.php?id=274518508260">Histio Heroes Research Fund</a></b>.</div><div><br /></div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-48210083520137419442010-02-07T09:32:00.005-06:002010-02-07T10:03:16.172-06:00Histio In The Headlines<div style="text-align: justify; ">We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis:<br /></div><div style="text-align: justify; "><br /></div><div style="text-align: justify; "><b>William Black</b></div><div style="text-align: justify; "><i><a href="http://www.thecourier.co.uk/output/2010/02/03/newsstory14487056t0.asp">Donor Appeal By Fife Man Given Second Chance At Life</a></i></div><div style="text-align: justify; "><br /></div><div style="text-align: justify; "><span style="font-weight: bold; ">Myles Clapsadl</span><br /><i><a href="http://www.cumberlink.com/articles/2010/02/01/news/local/doc4b6502dca646b947290866.txt">Cooke Man To Hike Everest For Ill Teen</a></i><br /><b><br /></b><span style="font-weight: bold; ">Maya Gordon</span><span><br /><i><a href="http://www.njherald.com/story/news/07-maya-g">Ogdensburg Girl Fights Rare Illness</a></i></span><i><br /></i><span style="font-weight: bold; "><br /><span style="font-weight: bold; ">Austin Hodge</span><span><br /></span><span><i><span class="Apple-style-span" style="font-weight: normal;"><a href="http://www.iclassifiedsnetwork.com/content.aspx?module=ContentItem&ID=164356&MemberID=1175">Make-A-Wish Treats Valley Family To Super Bowl Trip</a></span></i></span></span></div><div style="text-align: justify; "><span style="font-weight: bold; "><span><i><span class="Apple-style-span" style="font-weight: normal;"><a href="http://www.iclassifiedsnetwork.com/content.aspx?module=ContentItem&ID=164356&MemberID=1175"></a></span></i></span><i><a href="http://www.iclassifiedsnetwork.com/content.aspx?module=ContentItem&ID=164356&MemberID=1175"></a></i></span><i><br /></i><b>Jason Radunz</b><br /><span class="Apple-style-span" style="font-weight: normal;"><i><a href="http://esthervilledailynews.com/page/content.detail/id/505315.html">Radunz Benefit Saturday, Feb. 13</a></i></span></div><div style="text-align: justify; "><span class="Apple-style-span" style="font-weight: normal;"><i><br /></i></span></div><div style="text-align: justify; "><span></span></div><div style="text-align: justify;">Click on the story titles to read more about these brave adults and children. You can find more information about histiocytosis on the <a href="http://www.histio.org/">Histiocytosis Association of America</a> website.</div><div style="text-align: justify;"><br /></div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-80264796334583175842010-01-31T18:30:00.001-06:002010-01-31T18:32:48.069-06:00New HHRF Logo<a href='http://2.bp.blogspot.com/_MDODsQ8319U/S2YgueJE6iI/AAAAAAAAAVs/t2cFv9_e-Os/s1600-h/HHRF+Logo+I+_1_.jpg'><img src='http://2.bp.blogspot.com/_MDODsQ8319U/S2YgueJE6iI/AAAAAAAAAVs/t2cFv9_e-Os/s320/HHRF+Logo+I+_1_.jpg' border='0' alt=''style='clear:both;float:left; margin:0px 10px 10px 0;' /></a> <div style='clear:both; text-align:LEFT'><a href='http://picasa.google.com/blogger/' target='ext'><img src='http://photos1.blogger.com/pbp.gif' alt='Posted by Picasa' style='border: 0px none ; padding: 0px; background: transparent none repeat scroll 0% 50%; -moz-background-clip: initial; -moz-background-origin: initial; -moz-background-inline-policy: initial;' align='middle' border='0' /></a></div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-5422749778000920822010-01-30T13:10:00.007-06:002010-01-31T18:32:19.949-06:00New HHRF VideoWe wanted to share the new video (with awesome original music) that Bridget Colby has prepared for the Histio Heroes Research Fund (HHRF). <br /><br />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.<br /><br />Histio Heroes Research Fund -- <a href="http://www.cause.com/histioheroes"> http://www.cause.com/histioheroes</a><br /><br />TCCC Histiocytosis Program -- <a href="http://www.txccc.org/content.cfm?content_id=928">http://www.txccc.org/content.cfm?content_id=928</a><br /><br /><br /><object width="425" height="344"><param name="movie" value="http://www.youtube.com/v/tuoqonZwlqg&hl=en_US&fs=1&color1=0x006699&color2=0x54abd6"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/tuoqonZwlqg&hl=en_US&fs=1&color1=0x006699&color2=0x54abd6" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="425" height="344"></embed></object>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-11333626413361699992010-01-30T12:13:00.002-06:002010-02-23T17:29:19.197-06:00liam's lighthouse foundation on TODAY Show<div><span class="Apple-style-span" style=" color: rgb(51, 51, 51); font-family:'lucida grande', tahoma, verdana, arial, sans-serif;font-size:11px;"><h3 class="UIIntentionalStory_Message" ft="{"type":"msg"}" style="text-align: justify; color: rgb(51, 51, 51); margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; font-weight: normal; overflow-x: hidden; overflow-y: hidden; "><span class="UIStory_Message"><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;">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 -- </span></span><a href="http://liamslighthousefoundation.com/" target="_blank" rel="nofollow" onmousedown="UntrustedLink.bootstrap($(this), "3d2626e3fdee309b27dd1f0ea5213002", event)" style="cursor: pointer; color: rgb(59, 89, 152); text-decoration: none; "><span class="Apple-style-span" style="font-family:georgia;"><span class="Apple-style-span" style="font-size: small;">http://liamslighthousefoundation.com</span></span></a></span></h3></span></div><div><br /></div><div><br /></div><div><object width="420" height="245" id="msnbc22b6ea" classid="clsid:D27CDB6E-AE6D-11cf-96B8-444553540000" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=10,0,0,0"><param name="movie" value="http://www.msnbc.msn.com/id/32545640"><param name="FlashVars" value="launch=35122213&width=420&height=245"><param name="allowScriptAccess" value="always"><param name="allowFullScreen" value="true"><param name="wmode" value="opaque"><embed name="msnbc22b6ea" src="http://www.msnbc.msn.com/id/32545640" width="420" height="245" flashvars="launch=35122213&width=420&height=245" allowscriptaccess="always" allowfullscreen="true" wmode="opaque" type="application/x-shockwave-flash" pluginspage="http://www.adobe.com/shockwave/download/download.cgi?P1_Prod_Version=ShockwaveFlash"></embed></object><p style="font-size:11px; font-family:Arial, Helvetica, sans-serif; color: #999; margin-top: 5px; background: transparent; text-align: center; width: 420px;">Visit msnbc.com for <a style="text-decoration:none !important; border-bottom: 1px dotted #999 !important; font-weight:normal !important; height: 13px; color:#5799DB !important;" href="http://www.msnbc.msn.com/">breaking news</a>, <a href="http://www.msnbc.msn.com/id/3032507" style="text-decoration:none !important; border-bottom: 1px dotted #999 !important; font-weight:normal !important; height: 13px; color:#5799DB !important;">world news</a>, and <a href="http://www.msnbc.msn.com/id/3032072" style="text-decoration:none !important; border-bottom: 1px dotted #999 !important; font-weight:normal !important; height: 13px; color:#5799DB !important;">news about the economy</a></p></div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-19071393172577652122010-01-30T11:45:00.004-06:002010-02-23T17:37:57.094-06:00Histio Heroes and Angels In the News<div style="text-align: justify;">We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis:<br /></div><div style="text-align: justify;"><br /><span style="font-weight: bold;">Mina Chamberlin</span><span><br /><a href="http://www.ocregister.com/articles/marrow-228258-bone-chamberlin.html"><span style="font-style: italic;">Race To Help Find Bone Marrow Match</span></a><br /></span><br /><span style="font-weight: bold;">Richard Conaboy</span><span><br /><a href="http://thetimes-tribune.com/sports/coaches-vs-cancer-basketball-season-is-special-for-richard-conaboy-1.567706?localLinksEnabled=false"><span style="font-style: italic;">Basketball Season Is Special For Richard Conaboy</span></a><br /></span><span style="font-weight: bold;"><br /><span style="font-weight: bold;">Bill Holmes</span><span><br /><a href="http://www.mlive.com/news/kalamazoo/index.ssf/2010/01/an_innovative_approach_to_brai.html"><span style="font-style: italic;"><span class="Apple-style-span" style="font-weight: normal;">Innovative Approach To Brain Surgery</span></span></a><br /></span><span style="font-weight: bold;"><br />Nick Kappenman<br /></span><a href="http://m.argusleader.com/apps/pbcs.dll/article?AID=/20100121/LIFE/100121019/-1/WAP&template=wapart"><span style="font-style: italic;"><span class="Apple-style-span" style="font-weight: normal;">Comfort In A Cape</span></span></a><br /><br /><span style="font-weight: bold;">Lucas Mallory</span><br /><a href="http://auburnpub.com/articles/2010/01/25/local_news/news01.txt"><span class="Apple-style-span" style="font-weight: normal;"><i>Baby Battling Rare Immune System Illness</i></span></a></span><a href="http://auburnpub.com/articles/2010/01/25/local_news/news01.txt"></a><br /><br /><span><span>We also wanted to take a moment to remember and recognize several brave warriors who recently lost their courageous battles against histiocytosis:</span></span><br /><br /><a href="http://forums.kdhnews.com/news/obits/guestbook.aspx?o=4689"><b>Aamari Braijon Culbreath</b></a> (20 months old -- LCH)<br /><br /><a href="http://www.thetaylormichellerussellfoundation.org/"><b>Taylor Russell</b></a> (5 years old -- HLH)<br /><br /><a style="font-weight: bold;" href="http://media.www.psucollegio.com/media/storage/paper437/news/2010/01/21/FrontPage/Friends.Family.Remember.Student.Jake.Price-3856083.shtml">Jake Price</a> (20 years old -- HLH)<br /><br /><a href="http://www.legacy.com/obituaries/thestate/obituary.aspx?n=colin-a-kidd&pid=137910531"><b>Colin Kidd</b></a> (11 years old -- HLH)</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b><a href="http://ravensjourney.synthasite.com/">Raven Phoenix Watson</a></b> (4 years old -- HLH)</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b><a href="http://www.lethbridgeherald.com/content/view/129975/153/">Alycia Aubin</a></b> (17 years old -- HLH)</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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 <b><a href="http://www.facebook.com/profile.php?id=274518508260">Histio Heroes Research Fund</a></b>.</div><div><br /></div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-55912158035098766832010-01-30T11:40:00.000-06:002010-01-30T11:41:11.492-06:00Questions & Answers -- Histio Heroes Research Fund<div style="text-align: justify;">We have received questions from a number of histio parents about the <b><a href="htttp://www.causes.com/histioheroes">Histio Heroes Research Fund (HHRF)</a></b> 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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>What is the history behind this fund? What I mean is, how did it start or what was the impetus behind it?</b></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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 <b><a href="http://www.txccc.org/content.cfm?content_id=523">Histiocytosis Research Program at Texas Children's Cancer Center</a></b>. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>Is it governed by a Board of Directors?</b> </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">HHRF is a restricted and designated fund at <a href="http://www.txccc.org">Texas Children's Cancer Center (TCCC)</a> 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</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>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.?</b></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>Does the board that governs the fund also hold the grantees accountable?</b></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>How is the research reported and shared with others doing research into histiocytic disorders?</b></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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.<br /><br />Please feel free to contact us if you have any other questions or want more info about how to become involved with the <b><a href="htttp://www.causes.com/histioheroes">Histio Heroes Research Fund (HHRF)</a></b>.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b><u>The HHRF Parental Advisory Board</b></u></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">Betsi Burns </div><div style="text-align: justify;">Bridget & Patrick Colby</div><div style="text-align: justify;">Mike Golding </div><div style="text-align: justify;">Toby & Billi Jo Hausman</div><div style="text-align: justify;">Darci Moon </div><div style="text-align: justify;">Donna & Don Johnson</div><div style="text-align: justify;">Pam & Tom Sanger</div><div style="text-align: justify;">Melissa & Jeff Thompson </div><div style="text-align: justify;">Colleen McPeek & Ron Bechtold</div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-11354576971193158712010-01-30T11:05:00.001-06:002010-01-30T11:07:52.319-06:00Advice From HLH/BMT Parents<div style="text-align: justify;"><b><u><br /></u></b></div><div style="text-align: justify;"><b><u>Things We Have Learned</u></b><u></u></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">1. <b>Don’t get caught up in hospital rankings.</b> 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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">2. <b>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.</b> 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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">3. <b>EXPERIENCE-EXPERIENCE-EXPERIENCE.</b> 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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">4. <b>You need to feel that you are part of a team.</b> 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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">5. <b>Disease does not take a break and neither should your hospital.</b> All tests, specialists and medicines need to be available all the time and not just Monday through Friday.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">6. <b>Don’t be afraid to speak up.</b> 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. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">7. <b>Listen, ask questions, take notes and keep records.</b> 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.</div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-60861557048681278612010-01-30T10:56:00.004-06:002010-01-30T11:08:35.206-06:00Histio Heroes Research Fund -- Research Goals<div style="text-align: justify;"><b><br /></b></div><div style="text-align: justify;"><b>What is the goal of the research that Histio Heroes Research Fund is supporting?</b></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>What types of research activities will the Histio Heroes Research Fund be supporting over the next five years?</b></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">The Histiocytosis Research Program at Texas Children's Cancer Center has four areas of focus:</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><u><b>Comprehensive Analysis of Cell-Specific Gene Expression in LCH Tumors</b></u><b></b></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b><u>Developing Unique Models for Preclinical Drug Screening</u></b><u></u></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b><u>Developing a Comprehensive Genomic Database</u></b><u></u></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b><u>Implementing High Throughput Therapeutic Drug Validation Strategies</u></b><u></u></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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. </div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>Why should you get involved with HHRF and support this research?</b></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">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.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><b>You can learn more about this research and how to become involved by going to the Histio Heroes Research Fund page on Facebook -- </b></div><b><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><ul>http://apps.facebook.com/causes/424806</ul></div><div style="text-align: justify;">Please feel free to post any comments or questions about HHRF or this research.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;"><u>The HHRF Parental Advisory Board</u></div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">Betsi Burns </div><div style="text-align: justify;">Bridget & Patrick Colby</div><div style="text-align: justify;">Mike Golding </div><div style="text-align: justify;">Toby & Billi Jo Hausman</div><div style="text-align: justify;">Darci Moon </div><div style="text-align: justify;">Donna & Don Johnson</div><div style="text-align: justify;">Pam & Tom Sanger</div><div style="text-align: justify;">Melissa & Jeff Thompson </div></b><div style="text-align: justify;"><b>Colleen McPeek & Ron Bechtold</b></div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-37721591216553112782010-01-30T10:54:00.000-06:002010-01-30T10:55:59.486-06:00In Memoriam and Motivation<div>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.</div><div><br /></div><div><b><a href="http://www.legacy.com/obituaries/thestate/obituary.aspx?n=colin-a-kidd&pid=137910531">Colin Kidd</a></b> (11 years old -- HLH)</div><div><br /></div><div><b><a href="http://ravensjourney.synthasite.com/">Raven Phoenix Watson</a></b> (4 years old -- HLH)</div><div><br /></div><div><b><a href="http://www.lethbridgeherald.com/content/view/129975/153/">Alycia Aubin</a></b> (17 years old -- HLH)</div><div><br /></div><div><b><a href="http://www.caringbridge.org/visit/tannerbertauche">Tanner Bertauche</a></b> (4 years old -- JXG)</div><div><br /></div><div><b><a href="http://www2.ljworld.com/obits/2009/oct/30/elijah-cullison/">Elijah Cullison</a></b> (10 years old -- HLH)</div><div><br /></div><div><b>Matt Cwiertny</b> (24 Years Old -- HLH)</div><div><br /></div><div><b><a href="http://www.beckerritter.com/obit_print.cfm?id=4603">Benjamin Levie</a></b> (7 Years Old -- HLH)</div><div><br /></div><div><b><a href="http://www.watertowndailytimes.com/article/20091013/OBIT01/310139946/0/FRONTPAGE">Jeffrey G. Smith</a></b> (13 Years Old -- HLH)</div><div><br /></div><div><b><a href="http://micoweekend.com/200910095274/people/obituaries/irelyn-rose-fredock.html">Irelyn Rose Fredock</a></b> (16 Months Old -- LCH)</div><div><br /></div><div><b><a href="http://www.carepages.com/carepage/liamslighthouse">Liam Schulze</a></b> (20 months old -- HLH)</div><div><br /></div><div><b><a href="http://www.carepages.com/carepages/babyandrewakin">Andrew Akin</a></b> (2 years old -- HLH)</div><div><br /></div><div><b><a href="http://www.boersmafuneralhome.com/Obituaries/Matthew%20Gouwens%20Obit.pdf">Matthew Gouwens</a></b> (8 months old -- HLH)</div><div><br /></div><div><b><a href="http://www.innovadiscs.com/tim.html">Tim Selinske</a></b> (50 years old -- LCH)</div><div><br /></div><div><b><a href="http://www.caringbridge.org/visit/AbigailBuckner">Abigail Buckner</a></b> (2 1/2 years old -- HLH)</div><div><br /></div><div><b><a href="http://www.lubbockonline.com/stories/071909/obi_465528287.shtml">Jared Scott Eggemeyer</a></b> (17 years old -- HLH)</div><div><br /></div><div><b><a href="http://www.facebook.com/group.php?gid=104447385271">Jacob Kelly Ryan</a></b> (10 years old -- HLH)</div><div><br /></div><div><b><a href="http://www.timesrepublican.com/page/content.detail/id/517230.html">Karleigh Marie Hobart</a></b> (10 months old -- HLH)</div><div><br /></div><div><b><a href="http://www.marionisabella.blogspot.com/">Marion Isabella Sumner</a></b> (1 month old -- LCH)</div><div><br /></div><div><b><a href="http://www.tributes.com/show/Zachary-Tyler-85955242">Zachary Malik Tyler</a></b> (13 years old -- LCH)</div><div><br /></div><div><b><a href="http://www.kitsapsun.com/news/2009/mar/30/aiden-brian-wills-3/?partner=RSS">Aiden Brian Willis</a></b> (3 years old -- HLH)</div><div><br /></div><div><b><a href="http://obit.foxandweeks.com/obitdisplay.html?id=660883&listing=All">Meredith Herrin</a></b> (9 years old -- HLH)</div><div><br /></div><div><b><a href="http://www.youtube.com/watch?v=OM_i244xcdA">Kristina Brittany Incze</a></b> (17 years old -- LCH)</div><div><br /></div><div><b><a href="http://www.legacy.com/obituaries/newsday/obituary.aspx?n=matthew-gonzalez&pid=138583382">Matthew Gonzalez</a></b> (17 years old -- HLH)</div><div><br /></div><div><b><a href="http://www.thonline.com/article.cfm?id=237543">Derrick Drexler</a></b> (21 years old -- HLH)</div><div><br /></div><div>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.</div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-86221272895632862142010-01-04T17:23:00.000-06:002010-01-04T17:29:06.362-06:00TCCC Histiocytosis Program<div style="text-align: justify;">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.<br /></div><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_MDODsQ8319U/S0J2jIdXONI/AAAAAAAAAVQ/OholKW3eGk0/s1600-h/TCCC+Histiocytosis+Program.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 309px; height: 400px;" src="http://4.bp.blogspot.com/_MDODsQ8319U/S0J2jIdXONI/AAAAAAAAAVQ/OholKW3eGk0/s400/TCCC+Histiocytosis+Program.jpg" alt="" id="BLOGGER_PHOTO_ID_5423027247245637842" border="0" /></a>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-34308934740103850182010-01-04T17:20:00.000-06:002010-01-04T17:29:48.821-06:00Histio Heroes Research Fund -- Press Release and Mission Statement<div style="text-align: justify;"><b><a href="http://www.zumodrive.com/share/2JDhMjdkMz">The Histio Heroes Research Fund (HHRF)</a></b> 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.<br /><br />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.<br /><br />It is in that spirit we have created HHRF to support the <b><a href="http://www.txccc.org/content.cfm?content_id=928">Histiocytosis Program at the Texas Children's Cancer Center</a></b> 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.<br /><br />Click <b><a href="http://www.zumodrive.com/share/2JCRNWU0N2">HERE</a></b> to learn more about the TCCC Histiocytosis Program, its research and its goals over the next five years.<br /><br />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.<br /><br />Please contact one of us if you have questions about HHRF or would like to get involved.<br /><br />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.<br /><br />That goal is to accelerate us to a cure.<br /><br /><b><u>The HHRF Parental Advisory Board</u></b><br /><br />Betsi Burns <br />Bridget & Patrick Colby<br />Mike Golding <br />Toby & Billi Jo Hausman<br />Darci Moon <br />Donna & Don Johnson<br />Pam & Tom Sanger<br />Melissa & Jeff Thompson <br />Colleen McPeek & Ron Bechtold</div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-47705059320114420412010-01-04T17:15:00.000-06:002010-01-04T17:29:23.720-06:00Histio Heroes Research Fund<div style="text-align: justify;">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.<br /><br /><b>What is this project?</b><br /><br /><b>The Histio Heroes Fund</b> has been created by a group of histio families from across the country to help raise funds that will support <b>Dr. Ken McClain</b> in pursuing important and ground-breaking research into histiocytic disorders through the Histiocytosis Research Program at Texas Childrens' Cancer Center.<br /><br /><b>Why is this project important?</b><br /><br />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.<br /><br />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.<br /><br /><b>What is this project going to do?</b><br /><br /><b>The Histio Heroes Fund</b> will accept direct fund raising donations, organize fundraising events across the country to raise research funds and promote awareness about histiocytosis. <i>100% of monies raised or donated to will be used to fund research.</i><br /><br /><b>The Histio Heroes Fund</b> 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<br /><br /><b>How can you get involved in this project?</b><br /><br />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.<br /><br />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.<br /><br />You can help now by making a donation (no amount is too small) during the holiday season to <b>The Histio Heroes Research Fund</b> by going to the TXCCC Histiocytosis Program page - <b>http://www.txccc.org/content.cfm?content_id=928</b>.<br /><br />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.<br /><br /><b>Have other questions? Want more info? Ready to get involved? Contact us!!!</b><br /></div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-66697152316693984472009-12-01T22:46:00.004-06:002009-12-02T07:58:33.972-06:00Histio In The Headlines<div style="text-align: justify;"><div style="text-align: justify;">We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis:<br /><br /><span style="font-weight: bold;">Maya Chamberlin</span><br /><a href="http://nationaleagle.blogspot.com/2009/11/brother-requests-helping-hand-for-his.html"><span style="font-style: italic;">A Brother Requests A Helping Hand For His Little Girl</span></a><br /><br /><span style="font-weight: bold;font-size:100%;" >Isaac Clary</span><span style="font-size:100%;"><br /><a href="http://www.independentmail.com/news/2009/nov/26/child-anderson-county-gives-back/"><span style="font-style: italic;">Illness Inspires Boy To Collect Toys For Children In Hospital</span></a></span><br /></div><div style="text-align: justify;"><br /><span style="font-weight: bold;">Taylor Ehrens</span><span><br /><a href="http://www.bendbulletin.com/apps/pbcs.dll/article?AID=/20091126/NEWS0107/911260410/1041&nav_category="><span style="font-style: italic;">It's Been A Tough Year</span></a><br /></span><span style="font-weight: bold;"><br />Jalaya Farrington</span><span style="font-size:100%;"><br /><a href="http://www.miamiherald.com/news/southflorida/story/1352453.html"><span style="font-style: italic;">Mom Wants Disney World Escape For Daughter</span></a></span><br /><span style="font-weight: bold;"><span><br />Tania Haake</span></span><span style="font-size:100%;"><span style="font-weight: bold;"><br /></span><a href="http://abclocal.go.com/kgo/story?section=news/assignment_7&id=7137448"><span style="font-style: italic;">Providing Free Camps To Kids Living With Cancer</span></a></span><br /><span style="font-weight: bold;"><span><br />Jessie Woodford<br /></span></span><a href="http://www.radiosophie.com/pages/5751095.php"><span style="font-style: italic;"><span>A Season Of Wishes</span></span></a><span style="font-weight: bold;"><span><br /><br /></span></span><span><span>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 <a href="http://www.histio.org/">Histiocytosis Association of America</a> website.</span></span></div></div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-47217525334704923582009-12-01T11:33:00.005-06:002009-12-02T08:01:27.055-06:00Help With Holiday Cards<div style="text-align: justify;">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:<br /></div><br /><a style="font-weight: bold;" href="http://www.alexslemonade.org/contribute/holiday-cards">Holiday Cards</a> (Alex's Lemonade Stand Foundation)<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_MDODsQ8319U/SxZwlge6LFI/AAAAAAAAAUM/7KJZbadnWCA/s1600-h/giftshop_holidaycard.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 210px; height: 150px;" src="http://1.bp.blogspot.com/_MDODsQ8319U/SxZwlge6LFI/AAAAAAAAAUM/7KJZbadnWCA/s400/giftshop_holidaycard.jpg" alt="" id="BLOGGER_PHOTO_ID_5410635792009276498" border="0" /></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><a style="font-weight: bold;" href="https://www.mysimplegive.com/SG/sfDonate.jspx?uq=1259760894491&id=ch&pid=161">Connor's House Holiday Cards</a> (Connor's House)<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_MDODsQ8319U/SxZw6U3r-7I/AAAAAAAAAUU/KJoPBlaQJKU/s1600-h/card_banner.png"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 400px; height: 107px;" src="http://1.bp.blogspot.com/_MDODsQ8319U/SxZw6U3r-7I/AAAAAAAAAUU/KJoPBlaQJKU/s400/card_banner.png" alt="" id="BLOGGER_PHOTO_ID_5410636149669231538" border="0" /></a><br /><br /><br /><br /><br /><br /><br /><a style="font-weight: bold;" href="https://www.uhhospitals.org/Default.aspx?TabId=607">Rainbow Kids Cards</a> (Rainbow Babies & Children's Hospital)<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_MDODsQ8319U/SxZxIXvcndI/AAAAAAAAAUc/ozP2MRAdS4I/s1600-h/banner.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 400px; height: 180px;" src="http://2.bp.blogspot.com/_MDODsQ8319U/SxZxIXvcndI/AAAAAAAAAUc/ozP2MRAdS4I/s400/banner.jpg" alt="" id="BLOGGER_PHOTO_ID_5410636390958144978" border="0" /></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><a style="font-weight: bold;" href="http://www.histio.org/site/apps/ka/ec/product.asp?c=kiKTL4PQLvF&b=2179575&en=jkKNK1OOJkIRJ7NYIgLSIiMTJjLYL8PMLhL4KlP6G&ProductID=517478">Imagine A Cure Holiday Cards</a> (Histiocytosis Association)<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_MDODsQ8319U/SxZxWCjksFI/AAAAAAAAAUk/kIC_QZXfgPI/s1600-h/3_card_pix_resized.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 400px; height: 289px;" src="http://1.bp.blogspot.com/_MDODsQ8319U/SxZxWCjksFI/AAAAAAAAAUk/kIC_QZXfgPI/s400/3_card_pix_resized.jpg" alt="" id="BLOGGER_PHOTO_ID_5410636625789366354" border="0" /></a><br /><span style="font-weight:bold;"><br />HAPPY HOLIDAYS!!!</span>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-57019020839010290912009-12-01T09:41:00.000-06:002009-12-01T09:43:29.943-06:00Jake Olson: A True Inspiration<div style="text-align: justify;"><object width="425" height="344"><param name="movie" value="http://www.youtube.com/v/dX0ovhkgR7s&hl=en_US&fs=1&"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/dX0ovhkgR7s&hl=en_US&fs=1&" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="425" height="344"></embed></object><br /><br />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.<br /><br />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.<br /><br />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.</div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-11026697523242287562009-11-25T07:49:00.007-06:002009-11-25T07:57:06.811-06:00Giving Thanks For Helping Histio Heroes<div style="text-align: justify;">We wanted take time to recognize and express our enduring gratitude to <b><a href="http://www.txccc.org/content.cfm?content_id=309">Dr. Ken McClain</a></b> and the <b><a href="http://www.txccc.org/content.cfm?content_id=928">Histiocytosis Program at the Texas Children's Cancer Center</a></b> for really making a difference in the fight against histiocytosis.<br /></div><div style="text-align: justify; font-family: times new roman;"><blockquote><b><a href="http://www.txccc.org/content.cfm?content_id=928">The Histiocytosis Program at the Texas Children's Cancer Center</a></b>, is associated with <a href="http://www.texaschildrens.org/carecenters/cancer/default.aspx">Texas Children's Hospital</a>, the largest pediatric hospital in the United States, and serves as the pediatric program of <a href="http://www.bcm.edu/cancercenter">The Dan L. Duncan Cancer Center</a>, an NCI-designated cancer center at the Baylor College of Medicine<br /><br />The Histiocytosis Program Director, <b><a href="http://www.txccc.org/content.cfm?content_id=309">Kenneth L. McClain, M.D. Ph.D.</a></b>, 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.<br /><br /><b><a href="http://www.txccc.org/content.cfm?content_id=523">The Histiocytosis Research Laboratory</a></b>, 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.<br /><br /><b><a href="http://www.txccc.org/content.cfm?content_id=928">The Histiocytosis Program</a></b> 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.</blockquote></div><div style="text-align: justify;">Please contact <a href="mgolding@sydneyfund.org"><b>Mike Golding</b></a> or <a href="don_johnson@nottheactor.com"><b>Don Johnson</b></a> if you are interested in learning more about how you can help Dr. McClain in the fight against histiocytosis.</div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-989082733162734022009-11-24T07:57:00.005-06:002009-11-24T08:05:40.835-06:00Histio Heroes And Angels In The News<div style="text-align: justify;">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 :<br /></div><div style="text-align: justify;"><br /><span style="font-weight: bold;">Jacob Baltz</span><span><br /><a href="http://www.arkansas-catholic.org/article.php?id=1950"><span style="font-style: italic;">Pocahontas Parish Rallying Around 1-Year-Old And His Family</span></a><br /></span><span style="font-weight: bold;"><br />Gavin Shaw<br /></span><a href="http://www.athletics.wlu.ca/createarticle.php?ID=4433"><span style="font-style: italic;">"Superhero" Gavin Inspiration Behind 2 Day Blood Donor Clinic</span></a><span style="font-weight: bold;"><br /><br />Enda Walker<br /></span><a href="http://www.dailystar.co.uk/news/view/109053/X-Factor-stars-help-sick-children/"><span><span style="font-style: italic;">X Factor Stars Help Sick Children</span></span></a><span style="font-weight: bold;"><br /></span><br />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 <a href="http://www.histio.org/">Histiocytosis Association of America</a> website.</div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-73150883099681015202009-11-23T11:31:00.007-06:002009-11-23T11:52:53.814-06:00Liam's Lighthouse Foundation Holiday Ornament Fundraiser<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_MDODsQ8319U/SwrIYr_E9RI/AAAAAAAAAUE/r8xGnCW1u-8/s1600/5517_yosemite_and_beyond_to_11-20-09_353_display.JPG"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 300px; height: 400px;" src="http://3.bp.blogspot.com/_MDODsQ8319U/SwrIYr_E9RI/AAAAAAAAAUE/r8xGnCW1u-8/s400/5517_yosemite_and_beyond_to_11-20-09_353_display.JPG" alt="" id="BLOGGER_PHOTO_ID_5407354629061408018" border="0" /></a><br /><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;">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.</p><blockquote><p></p><p style="font-family: times new roman; text-align: justify;">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.<br /></p><p style="font-family: times new roman; text-align: justify;">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.<br /></p><p style="font-family: times new roman; text-align: justify;">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.<br /></p><p style="font-family: times new roman; text-align: justify;">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:</p><div style="font-family: times new roman; text-align: justify;"> </div><p style="font-family: times new roman; text-align: justify;">Liam’s Lighthouse Foundation<br />5818 Charlois Ct.<br />Colorado Springs, CO 80922</p></blockquote>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-58075561379199963172009-11-23T11:21:00.002-06:002009-11-23T11:28:15.476-06:00Rainbow Radiothon<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_MDODsQ8319U/SwrGGeDgecI/AAAAAAAAAT8/ZY-Dmdp1vac/s1600/16643_202408235890_177491315890_4360104_6487613_n.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 400px; height: 265px;" src="http://2.bp.blogspot.com/_MDODsQ8319U/SwrGGeDgecI/AAAAAAAAAT8/ZY-Dmdp1vac/s400/16643_202408235890_177491315890_4360104_6487613_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5407352117060991426" border="0" /></a><br /><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;"><br /></p><p style="text-align: justify;">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.</p><div style="text-align: justify;"> 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.</div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-2489526236354550322009-11-23T10:56:00.003-06:002009-11-23T11:02:09.548-06:00Tanner's Obituary<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_MDODsQ8319U/Swq_4IlFSmI/AAAAAAAAAT0/Mp6lnLgvb_E/s1600/13931_1288695860165_1313258220_822119_4445178_n.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 267px; height: 400px;" src="http://2.bp.blogspot.com/_MDODsQ8319U/Swq_4IlFSmI/AAAAAAAAAT0/Mp6lnLgvb_E/s400/13931_1288695860165_1313258220_822119_4445178_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5407345273708300898" border="0" /></a><br /><div style="text-align: justify;"><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br />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.<br /><blockquote><span style="font-size:100%;"><span style="font-family:times new roman;">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.<br /><br />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.<br /><br />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.<br /><br />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.</span></span></blockquote></div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0tag:blogger.com,1999:blog-166948979941427414.post-48085022734997646112009-11-17T12:07:00.007-06:002009-11-24T07:57:20.765-06:00Histio Heroes In The Headlines<div style="text-align: justify;">We wanted to highlight several recent stories about brave histio warriors who are currently battling against histiocytosis:<br /></div><div style="text-align: justify;"><br /><span style="font-weight: bold;">Alex Johnson</span><span><br /><a href="http://www.fredericknewspost.com/sections/health_fitness/display.htm?storyID=97592"><span style="font-style: italic;">Boy Battles Nine In A Million Disease</span></a><br /></span><span style="font-weight: bold;"><br />Brittany Kaufman<br /></span><a href="http://pittsburghlive.com/x/leadertimes/news/s_653254.html"><span style="font-style: italic;">Benefit Scheduled For Four Year Old</span></a><span style="font-weight: bold;"><br /><br />Miranda Lindenberg<br /></span><a href="http://media.www.theonlinerocket.com/media/storage/paper601/news/2009/11/13/News/Faculty.Members.Child.Diagnosed.With.Blood.Disorder-3831517.shtml"><span><span style="font-style: italic;">Faculty Member's Child Diagnosed With Rare Blood Disorder</span></span></a><span style="font-weight: bold;"><br /></span><span style="font-weight: bold;"><span><br />Eduardo Rivera<br /></span></span><a href="http://denver.craigslist.org/vnn/1469217800.html"><span style="font-style: italic;"><span>Response Slow To Help Child</span></span></a><span style="font-weight: bold;"><span><br /></span></span><br /><span style="font-weight: bold;">Liam Silva<br /></span><a href="http://claycord.blogspot.com/2009/11/over-300-attended-bone-marrow-drive.html"><span style="font-style: italic;">Over 300 Attend Bone Marrow Drive</span></a><span style="font-weight: bold;"><br /><br /></span><span><span>We also wanted to take a moment to remember and recognize a couple brave histio warriors who recently lost their courageous battles against histiocytosis:</span></span><br /><br /><a href="http://www.caringbridge.org/visit/tannerbertauche"><span style="font-weight: bold;">Tanner Bertauche</span></a> (4 years old -- JXG)<br /><br /><a style="font-weight: bold;" href="http://www2.ljworld.com/obits/2009/oct/30/elijah-cullison/">Elijah Cullison</a> (10 years old -- HLH)<br /><span><span><br />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 <a href="http://www.histio.org/">Histiocytosis Association of America</a> website.</span></span></div>Sydney Salem Golding Fundhttp://www.blogger.com/profile/09577114444874335219noreply@blogger.com0