The leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Society
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National Down Syndrome Society (NDSS) Receives the 2015 “Patient Organization of the Year” Award from the Rare Disease Legislative Advocates (RDLA)

NDSS Receives the Abbey Award for its Advocacy Work on the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647)

Washington, DC- The National Down Syndrome Society (NDSS) was honored by the Rare Disease Legislative Advocates (RDLA) for their advocacy campaign on the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313). 

The ABLE Act is the most bipartisan, bicameral bill currently before the 113th Congress. The bill has the support of more than 85% of the Congress – 74 US Senators and 381 US Representatives have cosponsored the ABLE Act. The Senate Finance Committee and House Ways and Means Committee have both struck deals for the bill to go to a vote in their respective legislative houses.

“This is an amazing honor for our organization and all those who have had a hand in this bill, especially our self-advocates and NDSS DS-Ambassadors” said Sara Weir, NDSS Vice President. “To be honored by our peers in the field is something that means a lot and shows how far this bill has come over the last eight years.”

When enacted into law, the ABLE Act will help millions of individuals with disabilities and rare diseases save the future, it will break down barriers to employment, and provide a better sense of financial security for families impacted by disability and rare disease across the country.

NDSS was in the running for this award with two other outstanding organizations, FightSMA (Spinal Muscular Atrophy) and the March of Dimes.

Jennifer McCloskey, the Senior Policy Advisor for Senator Robert Casey (D-PA), was also nominated for her work on the ABLE Act in the Congressional Staffer category.

Other winners include Cheryl Jaegar in the Congressional Staff category; William A. Gahl, M.D., Ph.D. in the Government Agency Leader category; Gabriella Miller for the Patient Advocate: Federal Level Advocacy category; and Jeff Leider Patient Advocate: State Level Advocacy category.

 

About NDSS

The National Down Syndrome Society is a nonprofit organization representing the more than 400,000 Americans with Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity enhance their quality of life, realize their life aspirations, and become valued members of welcoming community.

About RDLA

RDLA is a collaborative organization designed to support the advocacy of all rare disease groups. By Growing the patient advocacy community and working collectively RDLA can amplify many voices to ensure rare disease patients are heard in state and federal government.

  • Buddy Walk
  • NDSS Yourway
  • NDSS DS-Ambassadors