The Down Syndrome Community Needs You

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National Down Syndrome Congress

EIN: 51-0163631


The National Down Syndrome Congress (NDSC) is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome. Our mission is to provide information, advocacy, and support concerning all aspects of life for individuals with Down syndrome.

Faced with the previously unchartered terrain brought on by 2020, some organizations have folded, while others like NDSC, remain focused. Our work has been essential to support the needs of individuals with Down syndrome and their families during the pandemic, the NDSC has taken the following actions:

  • NDSC pivoted from our annual, 4-day, in-person Convention to a seven-week, virtual event. More than 3,000 parents, siblings, and self-advocates had the opportunity to access 50 live and recorded sessions for and participate in 18 sharing sessions to network with others with similar interests.
  • NDSC provided 15 hours of Parent Webinars on topics such as "Preparing for Online Learning, ""Medical Care Rationing," and "COVID & Down syndrome," serving over 6,000 people.
  • NDSC partnered with COPAA, the Council of Parent Attorneys and Advocates, to present a webinar on educational options for students with disabilities during the pandemic, designed to help parents keep from unintentionally voiding Federal protections for their children.
  • In collaboration with other national disability organizations, NDSC has developed and updated a "Q&A" on COVID-19 and Down syndrome. NDSC experts provided both medical expertise and translated this material into Spanish.

NDSC was proactive in developing needed dialog through two Zoom town hall style meetings and provided materials that address race relations in the NDSC Race Relations Library. The NDSC has taken the following actions to address the state of our nation's race relations:

  • NDSC hosted two town hall meetings addressing race relations and systemic racism in both the Down syndrome community and society-at-large.
  • NDSC worked with our nationwide network affiliates to develop the NDSC #CountUsIn campaign, a joint effort to address racism impacting individuals with Down syndrome and their families.
  • NDSC developed a list of digital resources and podcasts, including implicit bias training, to help our community members and our staff better understand our nation's racial tensions.

Although 2020 has been a year of firsts and change, NDSC has remained steadfast to compassionately serve the Down syndrome community as we have year after year and will continue to:

  • Host the world's largest gathering for individuals with Down syndrome, their families, and the professionals who work with them.
  • Provide year-round support and live-person resources through our National Call Center, which connects people with the information and resources they need.
  • Share prenatal information with healthcare professionals in multiple languages.
  • Advocate at the Federal and State levels for policies impacting people with Down syndrome and other disabilities.

NDSC's Policy & Advocacy team has been diligently working to ensure that people with Down syndrome receive the resources they need from the federal government to weather the COVID-19 crisis and make sure that their rights are protected the process. Our policy team:

  • Played a crucial role in protecting the rights of students with disabilities under the Individuals with Disabilities Education Act (IDEA).
  • Developed an in-depth analysis that was presented to the U.S Department of Education, and Congress which played a key role in stopping the inclusion of broad waivers to the Individuals with Disabilities Education Act (IDEA) in the CARES Act.
  • Developed resources that addressed constituent concerns regarding discriminatory medical treatment rationing.
  • Developed a resource that could be printed and presented to hospitals with strict No Visitation policies outlining the rights of those with disabilities.

Now, more than ever, we need your support to continue providing essential resources, services, and information to the Down syndrome community.

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