NDSS is NOW “The Leading Human Rights Organization for All Individuals With Down Syndrome!”


U.S. Capitol Hill, Washington, DC on January 12, 2017

“Hello to our fellow advocates from across the country and around the world! I am Sara Hart Weir – the President of the National Down Syndrome Society. I am joined by some very special guests, advocates and colleagues today, as we are coming to you LIVE from the US Capitol in Washington, DC! We, at NDSS, are thrilled to share some very exciting news about the future of NDSS and the Down syndrome community with you today!

For almost four decades, NDSS has been an organization that has provided state-of-the-art, comprehensive programming to all individuals with Down syndrome and their families. Today, we couldn’t be more proud of the programs and services we offer our incredible community:

  • Our one of a kind National Advocacy & Policy Center that advocates right here in our nation’s capital and in state capitals across the country on legislative issues than span the life of an individual with Down syndrome!
  • Our National Buddy Walk® Program – the most recognized public awareness event in the world for people with Down syndrome!
  • Our Community Outreach and Resources efforts – which provide the very best information on Down syndrome in the world in over 140 different languages!
  • And, our Public Awareness initiatives, which are showing the world that people with Down syndrome not only deserve to be treated with dignity and respect but also through new campaigns like our #DSWORKS®  Campaign – the first-ever employment campaign for people with Down syndrome that is successfully showing everyone, including those on Main Street and Wall Street, that people with Down syndrome are ready, willing and ABLE to WORK!

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Our core NDSS programs, under our new NDSS strategic plan, won’t change, they are only poised to grow stronger and more impactful. As a 4-Star Charity, one of the highest rankings a nonprofit can receive, we have made the strategic decision to capitalize on our current organizational strengthens, building on the ground work that has been set with three long-term goals in mind:

  1. Increase our capacity and grow revenue to provide our state-of-the-art, comprehensive and critical NDSS programs to the Down syndrome community by investing more resources into our programs
  2. Ensure NDSS, as an organization, has long-term sustainability for decades to come
  3. And expand our “footprint across the entire Down syndrome community” to encourage more individuals, supporters and advocates to join forces with us, “speak up, speak out” to help us make the world a better place for people with Down syndrome

We are reminded the very best ideas, big or small, come from the people, real people with life-changing ideas. Betsy Goodwin, our dedicated founder and board member, started NDSS in 1979 with Arden Moulton around her kitchen table.

The Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act – the most significant disability law since the Americans with Disabilities Act (ADA) is one of our proudest achievements of NDSS – it was also an “idea” born around a kitchen table, just a few miles from where we are standing by five dedicated parents from the Down syndrome community who realized – over a decade ago – the inequities that exist in our system – these advocates rolled up their sleeves and fought, not just for their own sons and daughters – but for all people with disabilities.

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As the President of NDSS, under our new strategic plan, I am very proud and deeply humbled to unveil our new mission statement to you today. NDSS is now:

“the leading human rights organization for all individuals with Down syndrome.”

After all, a human right is “a right that is believed to belong justifiably to every person” – we know that people with Down syndrome still face a complex system that holds them back, we still phase discriminatory practices in education, employment and in the community, we still have outdated stereotypes that perpetuate low expectations.

The time is now. And on behalf of our NDSS Board of Directors and staff with the passionate members of our NDSS DS-AMBASSADOR® program, our dedicated Buddy Walk Organizers, our new NDSS Athlete Ambassadors and along side our strong network of affiliates, we invite you to help make our “army” stronger, and join forces with us on this journey of change focused on “activism, advocacy and action” to create a society full of high expectations, meaningful jobs, inclusive educational and community opportunities for all people with Down syndrome.

Our team, more than ever, is prepared to remain on the front lines to advance proactive policies and legislation that ensures all people with Down syndrome have the same RIGHTS as every other American – 

advocacy matters.jpgthe right to earn a fair wage and meaningful job

the right to be educated alongside peers

the right to save money

the right to live independently

the right to get married

And the right to just live your own life! 

The truth is, we’ve been a human rights organization for a long, long time, we are redefining our presence to make our community bigger and stronger, paving a clear path forward so that people understand that individuals with Down syndrome have their own hopes, dreams and aspirations – and what’s truly needed is a systemic change to allow this to happen.

I hope – whether you’re tuning in from your office computer, your iPhone in the elevator, your Samsung on your coffee break, between meetings on your iPad or from any device at YOUR OWN kitchen table, you join NDSS – we invite you to be part of this movement – a movement which will redefine what having Down syndrome means for decades to come.

Together, we will create a world in which all people with Down syndrome deserve the same the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

From our NDSS family to your family, we are deeply grateful to advocate for and along-side you each and every day!”

-Sara Hart Weir, MS, President, NDSS

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