Welcome to your HLH Family!
Welcome to the HLH Support page, I'm sorry that you have a need for us, and it feels strange to say 'welcome' when who really wants to be a member of this club anyway!? But we do want you to feel welcome, and we're glad you're here!
Can you help us get to New York City this summer for the 2015 Liam's Lighthouse NYC Awareness Campaign?
Have you ever heard of Histiocytosis or Hemophagocytic Lymphohistiocytosis?? Most likely you have not, and we are trying to change that.
Children (and in more recent years, adults) are fighting for their lives and often it goes misdiagnosed for too long or in time to get help. It is generally diagnosed post mortem. We want to bring Histiocytosis awareness to the forefront and educate the medical community, as countless doctors have never even heard of this disease and it’s killing our children. We want to change the outcome. We are trying to get to New York City this summer to help spread awareness and be part of the NYC Histiocytosis Awareness Campaign (July 18 – 21, 2015) where we take to the streets of New York, and bombard the Today Show and Good Morning America with lifesize posters of our fighters, warriors, and angels who have been struck by this deadly, and misdiagnosed disease. We are hoping to get enough media attention to help spread awareness.
PLEASE help us reach our goal and make it to New York City this summer to be part of something amazing, inspiring and change the outcome for future patients! Visit our page: http://www.firstgiving.com/fundraiser/Hannahmarsh/5KtoFightHistio2015
HLH Center of Excellence
Unfortunately, few physicians are knowledgeable about HLH, and it is often misdiagnosed or diagnosed too late. Without access to effective treatment, primarily bone marrow transplantation (BMT), most patients with HLH die.
As the most experienced facility in the nation in treating HLH, Cincinnati Children’s has assembled a team of researchers, physicians, families who have faced an HLH diagnosis and philanthropists to create the HLH Center of Excellence.
While HLH is rare, Cincinnati Children’s treats a large population of children with HLH. The clinical and research pioneers at Cincinnati Children’s are committed to changing the outcome for children with HLH.
See this happy girl? She will celebrating her 7 year transplant anniversary, because of the amazing medical care she received, and because one special donor gave her the gift of life. Happy Anniversary Hannah!
Marsh Family Annual Toy Drive
If you have found your way here because of a toy you received through our local hospital, or wanted more information about the annual toy drive we do, then welcome! Click HERE for more details!