Update Information for December 31, 2012 (V 2.36)

New entries were made to the “Abstracts of Published Papers” as listed under the “Technical Papers” selection for recently published papers. The additions are as follows:

1. An article published in Blood.  The article is entitled, “Dramatic efficacy of vemurafenib in both multisystemic and refractory Erdheim-Chester disease and Langerhans cell histiocytosis harboring the BRAF V600E mutation” and includes an abstract.
2. An article published in Vnitr Lek.  The article is entitled, “The effect of lenalidomide on rare blood disorders: Langerhans cell histiocytosis, multicentric Castleman disease, POEMS syndrome, Erdheim-Chester disease and angiomatosis” and includes an abstract.
3. An article published in J Clin Oncol.  The article is entitled, “BRAF Mutations in Erdheim-Chester Disease” and does NOT include an abstract.

The “Grants” page was updated to announce that the ECD Global Alliance will be awarding a $50,000 research grant in 2013.  Proposals are due May 15, 2013.  A Request for Proposals will be distributed in January 2013.

The “Patient-to-Patient” page was updated to include a video of an ECD patient’s daughter singing a song called, Daddy’s Song, about her dad.

The “Home” page was updated to include the Spit for a Cure study being done at Texas Children’s Hospital.

The “ECD Studies” page was updated to include contact links to the ECD Global Alliance.

The “What is ECD?” page was updated to state that ECD is not currently categorized as a cancer, infection, auto-immune disease, or storage disorder.

The “How Can I Help?” and the “Home” pages were updated to announce that the 2012 $60,000 challenge donation was met.  Thank you to everyone who helped turn $60,000 into $120,000.  This money will be used to support all who are affected by ECD through research, sharing of information, raising awareness and education.

Chat summaries were added to the “Chat Room” page.