Press Release: RareVoice Awards Gala Honors Rare Disease Advocates and Leaders on Capitol Hill

Contact: Stephanie Fischer

sfischer@everylifefoundation.org

RareVoice Awards Gala to Honor Rare Disease Advocates and Leaders on Capitol Hill

Washington, DC (November 4, 2015) – Rare Disease Legislative Advocates will honor rare disease advocates and leaders on Capitol Hill at the RareVoice Awards Gala tonight.

Members of Congress will be recognized for their leadership on the 21st Century Cures Act which has several provisions critical to the rare disease community, including incentives to spur development of new therapies. Representative Fred Upton (R-MI) will receive a Lifetime Achievement Award. Representative Gus Bilirakis (R-FL), G.K. Butterfield (D-NC) and Diana DeGette (D-CO) will be honored with Congressional Leadership Awards.

Advocates are hopeful that key provisions of the 21st Century Cures Act will be included in the Senate companion legislation, Innovation for Healthier Americans, and that the Senate will act quickly to advance it. A delay in legislation is a delay in new treatments.

Congressional staff to be honored for efforts on behalf of the rare disease community include Clay Alspach (House Energy and Commerce Committee), Saul Hernandez (Rep. G.K. Butterfield), Sara Mabry (Sen. Bob Casey), Harrison Matheny (Rep. Ryan Zinke), Molly McDonnell (Rep. Leonard Lance), and Carly McWilliams (House Energy and Commerce Committee).

Rare disease advocates to be recognized for federal advocacy include Annette Bakker (Children’s Tumor Foundation), Ronald Bartek (Friedreich’s Ataxia Research Alliance), Noah Coughlan (Run for Rare), Woody Crouch (Sturge-Weber Foundation), Lisa and Max Schill (RASopathies Network), Steve Smith (National MPS Foundation), Steve Walker (Abigail Alliance), and Rob Whan (Caleb’s Crusade).

Rare disease advocates recognized for state advocacy include Sharon King (Taylor’s Tale), Kirsten Norgaard (Adrenal Insufficiency United), Elisa Seeger (Aidan Jack Seeger Foundation), Bruce Thompson (ALS parent advocate), and Patricia Weltin (Rare Disease United Foundation).

A Lifetime Achievement Award will be presented to Dr. Stephen Groft for his dedication to stimulating research and advancing development of therapies during his tenure at the Food and Drug Administration (FDA) and National Institutes of Health (NIH).

Thank you to Shire, the Presidential Sponsor, and other sponsors including AbbVie, Alexion, Amgen, Amicus, Genzyme, Novartis, PhRMA, Raptor, and Vertex.

Additional information is available at http://rarevoiceawards.org/.

 Rare Disease Legislative Advocates is a collaborative organization designed to support the advocacy of all rare disease groups. By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure rare disease patients are heard in state and federal government. For more information, visit http://rareadvocates.org/.


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