NDSS President & CEO Sara Hart Weir
Sara Hart Weir, MS, is the President & C.E.O. of the National Down Syndrome Society. An
Olathe, 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 & C.E.O., 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 49 state ABLE laws as well as played a significant role
in launching over 40 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 Chair of the ABLE Alliance for
Weir spearheaded the launch of NDSS’ new #DSWORKS® Employment Program, the first of its kind program that is 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 Institutes of Health (NIH) Down Syndrome Consortium, 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 DSAMBASSADOR
® 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 was awarded a certificate of completion for the Emerging
Leaders Program in November 2017 from the Harvard University John F. Kennedy School of Government in Executive Education.
Weir is a 1999 graduate of Leadership Olathe, a program of the Olathe Chamber of Commerce, and a 2000 graduate of Olathe South
High School where she was awarded the 2000 OSHS Principal’s Senior Leadership of the Year Award.
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 a former
President of its Alumni Council.
Weir also serves on the board of directors for Inclusion Connections, a Kansas City nonprofit, which serves teens and young adults
with disabilities by creating inclusive opportunities for community involvement, access to meaningful employment and better
options for independent living; as well as Creative Spirit, a nonprofit devoted to creating integrated employment opportunities for
individuals with intellectual and developmental disabilities at the best companies in the world.
Weir is an international expert and featured speaker on nonprofit leadership, 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 or deep into a new non-fiction book.