ST. LOUIS, MO, JULY 17, 2014 - TWO FAMILIES AFFECTED BY RARELY DIAGNOSED HISTIOCYTOSIS DISEASE HOST VIRTUAL 5K WALK WITH LIAM'S LIGHTHOUSE FOUNDATION.ST. LOUIS, MO, July 17, 2014 - Two Families Affected by Rarely Diagnosed Histiocytosis Disease Host Virtual 5K Walk with Liam's Lighthouse Foundation. Sunday, July 20, 2014, 10AM - Team Claire & Team Jesica will join together to host a virtual 5K walk location at Longview Farm Park-the same time hundreds are gathering with Liam's Lighthouse Foundation at Hudson River Park, NYC. Together, we will walk to raise funds for ground breaking research, to increase awareness of a disease that all too often goes misdiagnosed, and to provide support to each other as we fight histio.
Claire Biangardi (age 4) was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH) in 2013. HLH is a rarely diagnosed blood disease that is treated with chemotherapy, steroids and sometimes bone marrow transplants - just like cancer. Claire is currently undergoing periodic evaluations to monitor the HLH and determine if a bone marrow transplant will be necessary. Jesica Barton Hellwege was diagnosed with Langerhans Cell Histiocytosis (LCH) when she was a young girl in the early 80's. LCH is when a group of underdeveloped white cells that make up the immune system gather in an area causing damage rather than fighting infection. She has endured many rounds of steroids, chemotherapies and surgeries to keep the tumors from growing. Claire & Jesica are one of a kind survivors. Due to the lack of government funding, Histiocytosis research depends on the generosity of private donations. Team Claire & Team Jesica welcome you to come down to join them and ask questions, so together you can help save a life from Histiocytosis. What started out 5 years ago as 3 friends trying to support a grieving mother who lost her 20 month old son Liam to HLH, has grown larger and faster than any of us could have imagined. Every step taken and every dollar raised brings us closer to the ultimate finish line...A CURE! Those wishing to participate or help can do so by visiting the registration table starting at 9AM the day of the event. Registration is $30. Help us reach Liam's Lighthouse goal of 100,000! Donations are tax deductible. To learn more visit: www.LiamsLighthouseFoundation.org Liam's Lighthouse Foundation (LLF), a non-profit, tax-exempt organization, was established to create and provide educational material and awareness about Hemophagocytic Lymphohistiocytosis (HLH) including Histiocytic Disorders, and to distribute unbiased, factual information to physicians, hospitals, and the community regarding this disease. Our focus is also to bring families affected by HLH/Histiocytosis together and offer support through a variety of resources. We aim at raising much needed funds for continued education of physicians and research to develop safer and more effective treatment methods and ultimately a cure. LLF is also dedicated to bring awareness to the community about the importance of becoming a blood and bone marrow donor. ###
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