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Creating the First Summit for Adults with Down Syndrome

By Sara Hart Weir, M.S. and Jadene S. Ransdell 

Are you ready to advocate with us at the first annual NDSS Down syndrome Adult Summit? April 9th – 11th marks our very first Adult Summit hosted by the National Down Syndrome Society (NDSS) and its Self-Advocate Advisory Board (SAAB) in collaboration with the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and the National Alliance for Caregiving (NAC). You can expect to hear from exceptional speakers presenting on topics including healthcare and research, inclusive education, community integration, economic self-sufficiency, employment, aging and more.

How did this all begin? The idea of holding a conference for adults with Down syndrome, their families and caregivers began on a trip down I-4 between Orlando and Tampa. As many ideas spark with a nice drive and good scenery, this too, would spark history and drive advocacy for all individuals with Down syndrome, promoting avenues of dialogue to share stories and celebrate alongside fellow friends, family, advocates and supporters.

Jadene S. Ransdell, founder of the Adult Summit, envisioned a conference on that drive, where families, friends and advocates could join together in support of the Down syndrome community. Matt, her youngest son who has Down syndrome, taught her how to overcome prejudice, how to advocate for those who had no voice and to think outside of the box.

As the life expectancy for individuals with Down syndrome increases, NDSS is committed to ensuring our adults with Down syndrome are realizing their aspirations and are valued members of society. The Adult Summit speakers will address important services and topics that are becoming increasingly more prevalent in the adult Down syndrome community such as sexual violence and misconduct, higher education, residential options, healthy aging and more.

This is a transformative time, as policymakers are hearing our stories and becoming more aware of the accomplishments and capabilities of all individuals with Down syndrome and important policy initiatives are being passed.

Following the Adult Summit, 300 advocates and more than 75 self-advocates will be joined together from across the nation at the annual Buddy Walk on Washington Advocacy Conference.

I hope this Summit inspires you to reach for the stars – what happens next is up to you.


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Sara Hart Weir, MS, is the President & C.E.O. 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.

Jadene S. Ransdell has a B.S. and over 40 years of experience working with families and professionals in areas related to developmental disabilities, including state and local education systems, developmental disabilities programs, and family support programs.
Jadene has served as a volunteer on numerous boards, councils and organizations. She is a current member of the National Task Group on Intellectual Disabilities and Dementia Practices.
Jadene lives in Clearwater, Florida with her husband of more than 45 years and has two sons and two grandsons. Jadene’s younger son was born with Down syndrome, Autism and has a recent diagnosis of Alzheimer’s.