Important Announcement from NDSS

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(February 25, 2019) To Our National Down Syndrome Society Family:

It is with both deep gratitude and sadness that we announce that after seven years in the trenches, our National Down Syndrome Society’s (NDSS) President and C.E.O. Sara Hart Weir has decided to step down this year to pursue opportunities to continue her advocacy and service to our community as well as others in Kansas.
We, as a board, want to thank Sara for seven years of leadership, dedication and commitment to the entire Down syndrome and disability community. NDSS has experienced record growth, mission-driven results and wide-spread impact during Weir’s tenure with our organization, and we wanted to share some of our most notable accomplishments under Sara’s leadership:

  • Changing our mission statement "to be the leading human rights organization for all individuals with Down syndrome." This simple statement will continue to serve as NDSS’ guiding star and set this organization on an actionable path demonstrating that all individuals are entitled to the same rights as every other American.
  • Leading the historical, bipartisan advocacy effort and passage of the Stephen Beck Jr., Achieving a Better Life Experience Act (P.L. 113-295), subsequently enacting 49 state ABLE laws and launching over 40 state ABLE plans. To date, we have over 35,000 ABLE accounts with over $170 million in assets across our great nation.
  • Launching our #DSWORKS® Employment Program, a first of its kind program, that is showing the world, from Main Street to Wall Street, that people with Down syndrome are ready, willing and ABLE to work.
  • Creating a movement to end #LawSyndrome. With our dedicated staff, where over 25% of our team has Down syndrome, we have stood up (and stood out) to advocate for and alongside individuals with Down syndrome to remove any barrier standing in their way, modernize public policy and create private sector solutions to public sector problems.

As we embrace our past, present and future, our NDSS Board of Directors is delighted to announce our Senior Vice President of Philanthropy, Outreach and Events, Kandi Pickard, has been appointed as our Interim President & C.E.O., and Weir will remain involved as a senior advisor.

Kandi has been with our organization since 2015, after joining our team from the Down Syndrome Association of Northeast Indiana as Vice Chair. Pickard spearheaded groundbreaking initiatives during her tenure at NDSS, including our Annual NDSS Adult Summit, C21 and the recent launch of our latest NDSS 40th Anniversary Campaign. Kandi is also a mother of four children, including her son, Mason, who has Down syndrome. For our board and the Down syndrome community as a whole, it is gratifying that Kandi, who like many of us, started as a local volunteer and advocate, will now serve NDSS in a central leadership role. Kandi, and like the many of you reading this message are the drivers behind our organization in your local communities throughout our country. 

NDSS has been part of the fabric of this country for 40 years, and thanks to you, we will be around for many more. Our entire NDSS Board and staff stand behind Kandi as she leads our organization through the transition and will maintain focus on being the leading human rights organization of all individuals with Down syndrome.

We cannot thank Ms. Weir enough for the passion, enthusiasm and motivation she has given NDSS these past seven years. As a part of this process, Sara wanted to share her own words with each of you about her NDSS transition and future endeavors.

As always, thank you for all you do for NDSS and all people with Down syndrome!



F. Gordon Spoor


National Down Syndrome Society



Dear NDSS Family and Friends:

For the last seven years, I’ve had two of my dream careersFrom 2012 to 2014, I was very proud to lead our National Down Syndrome Society’s (NDSS) National Advocacy and Public Policy Center in Washington, DC; and from 2014 to today, I am even more honored and humbled to serve as your President and C.E.O. of the National Down Syndrome Society, the leading human rights organization for all individuals with Down syndrome.

True leaders allow others to lead. As we celebrate 40 years of NDSS, our imperative mission, groundbreaking programs, as well as our strongest financial position to date, I feel now is the opportune time to step aside and allow others to step up, lead and implement NDSS’ new strategic plan and vision, and take this organization to the next level.

There’s no place like home, and Kansas has always been home for me. As many of you know, I was first introduced to my best friend with Down syndrome, Kasey, from Kansas, almost two decades ago. Our friendship and opportunities through college and graduate school allowed me to work in our nation’s capital. It was on Capitol Hill where I witnessed first-hand the importance that the role our government, at all levels, plays in the future of not just Kasey but all individuals with Down syndrome. From that moment on, I became a life-long advocate. I am forever grateful to Kasey because she opened my eyes, ears and heart to NDSS, the Down syndrome community and each of YOU!

While in the trenches, I’ve had the fortune to travel across this great country meeting so many of YOU - listening to your stories, collaborating on policy solutions, at all levels of government, and advocating along-side our extraordinary army of advocates fighting to give ALL people with Down syndrome a fair shot at the “American Dream”. Gordon noted many of our collective accomplishments and successes over the last seven years, and I am beyond proud of each of those and many more.

I will remain forever PROUD that NDSS has remained an organization embracing the philosophy "if you're not at the table, you're on the menu"– and that we have committed ourselves to work every day to modernize public policy and ensure people with Down syndrome are represented at every "table" where critical decisions are made - whether it's the White House, the U.S. Congress, the United Nations or in state capitals across the country.

Once an advocate, always an advocate. As I pursue this next phase in my career and life, I want this community to know that I will always be a champion for people with Down syndrome and their families, and I will always fight for the dignity, respect and rights of people with disabilities in this country.

Now let’s get back to work.

Onward and upward,

Sara Hart Weir, MS
President & C.E.O.
National Down Syndrome Society