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

National Down Syndrome Society
8 E 41st Street, 8th Floor
New York New York 10017
800-221-4602
[email protected] 

Sara Hart Weir, President

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Sara Hart Weir, MS, is the President of the National Down Syndrome Society. A Kansas native, Weir's passion of fighting for the human rights of all people with Down syndrome stems from her experience as a peer mentor and friend to a young woman with Down syndrome, Kasey, over two decades ago. As NDSS’ President, Weir oversees the organization’s mission, vision and administration, which is the largest nonprofit in the United States dedicated to advocating for people with Down syndrome and their families. Weir’s philosophy to effective advocacy is “to be at the table” and she works each day to ensure people with Down syndrome earn and are represented at every table where critical decisions are made - whether it’s the White House, the US Congress, the United Nations or in state capitals across the country.

Under Weir’s leadership, NDSS led the bipartisan advocacy effort behind the passage of the landmark, historical Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act in 2014, and the state advocacy effort to enact 48 state ABLE laws as well as played a significant role in working to launch over 20 state ABLE plans. The ABLE Act established tax-free savings accounts for people with Down syndrome and other disabilities and is hailed as the most significant legislation for the disability community since the Americans with Disabilities Act (ADA). Weir is also the Co-Founder of the ABLE Alliance for Financial Empowerment.

Weir spearheaded the launch of NDSS’ new #DSWORKS® Campaign, the first of its kind campaign showing the world that people with Down syndrome are ready, willing and ABLE to work. She has also formed international partnerships with SAUT: The Voice of Down Syndrome in Saudi Arabia and Ukrainian Down Syndrome Organization. Weir also serves as a member of the National Task Group on Intellectual Disabilities and Dementia Practices, the National Center on Criminal Justice and Disability® and was appointed by former Governor Martin O’Malley to serve on the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities. Weir joined NDSS in 2012 as its Vice President of Advocacy & Affiliate Relations and established the NDSS DS-AMBASSADOR® program, the first-ever grassroots advocacy network for the Down syndrome community that encourages advocates of all kinds to speak up and speak out on issues of critical importance.

Weir has a Bachelor of Arts in Psychology and Political Leadership from Westminster College and a Master of Science in Public Policy and Management from Carnegie Mellon University’s Heinz College. Weir has earned many honors including; Westminster College Senior of the Year, Winston Churchill Award for Leadership and Service, Coca-Cola Community All-American and was the recipient of the 2014 Westminster College Young Alumni Achievement Award. Weir also served on the Board of Trustees for her alma mater, Westminster College from 2012-2015, and is currently the President Emeritus of its Alumni Council. In 2014, Weir gave the 2014 Westminster Convocation Address highlighting her passion for NDSS and advocating for people with Down syndrome.

Weir is an international expert and featured speaker on Down syndrome, advocacy, the ABLE Act and human rights for people with disabilities. Weir has been featured in USA Today, NY Times, Wall Street Journal, NPR, Washington Post, CNN, Fox News, The Hill, Money Magazine, Al Jazeera and many others. In her spare time, you can find Weir at a SoulCycle or hot yoga class in Washington, DC or New York City or deep into a new non-fiction book.

You can keep up with Weir’s travels on Facebook, Twitter and Instagram and follow her blog “A View from the NDSS President”.

To reach Ms. Weir, please contact NDSS Executive Assistant to the President Josh Hill at [email protected].

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