FOR IMMEDIATE RELEASE
NDSS Contact:
Michelle Sagan
301-728-0447
FOR IMMEDIATE RELEASE
The National Down Syndrome Society Holds Annual Down Syndrome Advocacy Conference on Capitol Hill for World Down Syndrome Day
Washington, D.C. - March 19, 2024 – On World Down Syndrome Day, March 21, the National Down Syndrome Society (NDSS) will gather individuals with Down syndrome, their families, and other advocates on Capitol Hill for their annual Down Syndrome Advocacy Conference. With a focus on education and community engagement, the event offers an opportunity for individuals with Down syndrome and other advocates to come together and have their voices and perspectives heard directly by their elected officials in Washington, D.C.
The conference begins on Wednesday, March 20, with advocacy training sessions, informative discussions on legislative priorities, and insights from guest speakers. New conference experiences this year include a track designed for individuals with Down syndrome and sibling advocates ages 12-17, childcare for children ages 6-11, and an optional state policy bootcamp. Attendees will equip themselves with the knowledge and skills necessary to converse with lawmakers about legislation impacting the Down syndrome community at the local, state, and federal levels.
On Thursday, March 21, almost 300 people will unite to advocate for the rights of individuals with Down syndrome by meeting with their members of Congress on Capitol Hill. This is a unique opportunity to engage directly with policymakers and raise awareness about important issues facing the Down syndrome community.
This year, NDSS is focusing on four federal initiatives: The Charlotte Woodward Organ Transplant Discrimination Prevention Act, the SSI Savings Penalty Elimination Act, the NAPA Reauthorization Act, and the DeOndra Dixon INCLUDE Project Act of 2024.
The Charlotte Woodward Organ Transplant Discrimination Prevention Act, also referred to as “Charlotte’s Bill,” would prevent discrimination based on disability in the organ transplant system and is named after NDSS staff member, self-advocate, and transplant recipient, Charlotte Woodward.
The SSI Savings Penalty Elimination Act would increase the allowable asset limitation to remain eligible for supplemental security income (SSI) from $2,000 to $10,000 for individuals and would eliminate the marriage penalty by increasing the asset limitation for couples from $3,000 to $20,000.
Given the genetic connection between Down syndrome and Alzheimer’s disease, NDSS is urging legislators to include the Down syndrome community in all federal initiatives related to Alzheimer’s disease. Specifically, the Down syndrome community must be included in the National Alzheimer’s Plan Act (NAPA) Reauthorization Act which would continue the important work of the NAPA Council.
Additionally, NDSS is pleased to support the GLOBAL Down Syndrome Foundation in advocating for the DeOndra Dixon INCLUDE Project Act of 2024 to ensure funding for the important work of the INCLUDE project, which has resulted in significant advancements in knowledge and understanding of critical health and quality-of-life needs for individuals with Down syndrome and the general population.
"We are thrilled to host our Down Syndrome Advocacy Conference on World Down Syndrome Day this year," said NDSS President & CEO Kandi Pickard. "This conference is an important opportunity for NDSS to empower individuals within the Down syndrome community to drive meaningful change across all levels of government. We are particularly excited to welcome advocates from 39 states, including 69 individuals with Down syndrome."
Those interested in joining the National Down Syndrome Society’s advocacy efforts are encouraged to visit www.ndss.org/be-an-advocate.
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About NDSS
Founded in 1979, the National Down Syndrome Society (NDSS) empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions. NDSS engages grassroots advocates at the federal, state, and local levels and creates resources to support individuals with Down syndrome, their families, and caregivers across the lifespan on topics including education, employment, health and wellness, and aging. NDSS founded the National Buddy Walk® Program in 1995 and hosts community engagement events throughout the country including the New York City Buddy Walk® and Times Square Video, the NDSS Adult Summit, and the Down Syndrome Advocacy Conference. Visit www.ndss.org to learn more.