WASHINGTON, Nov. 12, 2014 /PRNewswire-USNewswire/ -- On November 13, 2014, Rare Disease Legislative Advocates will host the RareVoice Awards Gala in Washington D.C. to honor advocates who have made a difference in the fight against rare diseases.
The event will be emceed by Emmy-winning news anchor Greta Kreuz along with Jonny Lee Miller, who stars as Sherlock Holmes in the hit CBS show Elementary and is known for his performance in the award-winning film Trainspotting. Mr. Miller will be honored with an Abbey for speaking on Capitol Hill to urge Congress to spur the development of treatments for rare diseases.
Representative Doris Matsui (D-CA) will be honored with the Congressional Leadership Award for her distinguished efforts to establish the National Pediatric Research Network at the National Institutes of Health (NIH), and to ensure funding for the Food and Drug Administration (FDA).
Congressional staff will also receive recognition, including: Taylor Gilliam – Office of Representative John Carter (R-TX), Josh Teitelbaum – Senate HELP Subcommittee on Children & Families, James "JP" Paluskiewicz – Office of Representative Michael C. Burgess M.D. (R-TX), Cheryl Jaeger – former Office of Representative Eric Cantor (R-VA), and Jennifer McClosky – Office of Senator Bob Casey (D-PA).
Leaders from the NIH receiving recognition include: William A. Gahl, M.D., PhD, Clinical Director of the National Human Genome Research Institute and Alan E. Guttmacher, M.D., Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
Several patient organizations and individuals will also be honored: FightSMA, the National Down Syndrome Society, and the March of Dimes. Individual patient advocates (federal-level) being honored include: Julie Flygare – Project Sleep, Narcolepsy: Not Alone, Kim & Mike Illions – Pediatric Hydrocephalus Foundation, Gabriella Miller (posthumous) – Smashing Walnuts Foundation, and Marc Yale – International Pemphigus & Pemphigoid Foundation. Nominees from the state-level will include: Nicole Dreyer Gavin – PKU Parent Advocate, Jennifer Knapp & Kristen Norgaard – Adrenal Insufficiency United, and Jeff Leider – Let Them Be Little X2.
This event is made possible by our Gala sponsors: Shire, Alexion, Genzyme, Onyx, BioMarin, Novartis, Raptor and Vertex.
More information available at www.rarevoiceawards.org.
RDLA is a collaborative organization designed to support the advocacy of all rare disease patient groups. RDLA is a program of the EveryLife Foundation for Rare Diseases, a nonprofit dedicated to accelerating biotech innovation for rare disease treatments.
Contact: Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases
Email: [email protected]
SOURCE Rare Disease Legislative Advocates