National Down Syndrome Society

National Down Syndrome Society

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NDSS is creating a world where individuals with Down syndrome thrive

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.

05/22/2026

People with Down syndrome, like everyone else, use behavior to communicate. When they canโ€™t clearly express their needs, feelings, or discomfort, it may show up as behaviors that interrupt daily routines.

In this free webinar, Thaddeus J. Nestheide, PsyD, Bree Stepp, BCBA, COBA, and Amanda Steel, MA from the Timothy Freeman, MD, Center for Developmental Disabilities will offer parents, families, and caregivers a practical way to understand and respond to challenging behaviors. They will also share helpful tools and resources you can use along the way.

Join us on May 28 at 6 PM ET by registering at https://ndss.org/ndss-webinars

05/21/2026

Each year to kick of the NYC Buddy Walk, NDSS puts on the Times Square Video Presentation, where photos of 500 individuals with Down syndrome are displayed on two jumbotrons in the heart of Times Square!

๐——๐—ผ๐—ป'๐˜ ๐—บ๐—ถ๐˜€๐˜€ ๐˜๐—ต๐—ฒ ๐—ฑ๐—ฒ๐—ฎ๐—ฑ๐—น๐—ถ๐—ป๐—ฒ ๐˜๐—ผ ๐˜€๐˜‚๐—ฏ๐—บ๐—ถ๐˜ ๐—ฎ ๐—ฝ๐—ต๐—ผ๐˜๐—ผ ๐˜๐—ต๐—ถ๐˜€ ๐˜†๐—ฒ๐—ฎ๐—ฟ! Applications close June 4 and applicants will be notified by July 8 if their photo has been selected or not. Find details and the application link at https://ndss.org/nyc-buddy-walk-tsv

05/20/2026

On Tuesday, June 2 at 10 AM ET, NDSS is hosting a virtual meeting with the U.S. Food and Drug Administration (FDA) to discuss Down syndrome-associated Alzheimer's disease (DS-AD).

You can:
โญ๏ธ Attend the meeting

โญ๏ธ Submit comments before the meeting

โญ๏ธ Participate during the meeting by answering poll questions, calling in with comments, or emailing responses to be read on air

This meeting will give the FDA and other key decision makers the chance to hear directly form patients, their families, caregivers, and advocates about the symptoms of DS-AD, the impacts on daily lives, experience with current treatments, and hopes for future therapies.

Get meeting details and learn how you can make an impact during this meeting at ndss.org/el-pfdd

05/19/2026

Exciting news! ๐Ÿ’ฅ We are thrilled to announce that NDSS' Manager of Public Policy, Kayla McKeon, has made the Forbes Accessibility 200 list that honors her work as one of the biggest innovators and impact-makers in Accessibility!

We're so proud to see Kayla's fierce advocacy and unwavering dedication to the Down syndrome community recognized by Forbes for the second year in a row!

The list includes the top 200 global impact-makers in Accessibility-related fields like communication, mobility, education, software, consumer products, robotics, sports and recreation, travel, the workplace, entertainment, and more.

Read more at www.forbes.com/lists/accessibility

05/18/2026

NDSS is honored to support self-advocates with Down syndrome in pursuing their goals, whether itโ€™s starting a business, continuing education, or following a personal passion.

๐Ÿšจ Find an NDSS scholarship that's right for you or someone you know and ๐—ฎ๐—ฝ๐—ฝ๐—น๐˜† ๐—ฏ๐˜† ๐— ๐—ฎ๐˜† ๐Ÿฎ๐Ÿฎ๐—ป๐—ฑ at ndss.org/scholarships.

Photos from National Down Syndrome Society's post 05/17/2026

๐Ÿšฃโ€โ™‚๏ธ Paddles Up for Down Syndrome, NDSSโ€™ Dragon Boat team, took home GOLD in their division at the Washington, D.C. Dragon Boat Festival yesterday!

Congratulations to our paddlers and THANK YOU to our incredible cheer squad!

๐Ÿ‰ We have two spots available for the Independence Dragon Boat Regatta in Philadelphia on June 6! Email Misty Adams at [email protected] to claim the spots.

05/16/2026

Join us on May 21 at 1 PM ET as Helen Genova, associate director of the Center for Autism Research at Kessler Foundation, walks attendees through the web-based program, KF-Strideโ„ข.

๐Ÿ”ต This program is backed by research and designed to help teens and adults identify their personal strengths and express them to achieve their goals.

๐Ÿ”ต Created with neurodiverse learners in mind, the KF-Strideโ„ข curricula cover a range of topics such as employment readiness and wellness. KF-Stride offers key advantages over existing programs, which have focused on fixing what someone is doing โ€œwrong.โ€ Instead, KF-Stride focuses on what someone is doing โ€œright.โ€

Register for free at https://ndss.org/ndss-webinars

Photos from National Down Syndrome Society's post 05/14/2026

The 2026 NDSS Down Syndrome Advocacy Conference concluded yesterday with 125 meetings on Capitol Hill to talk about policies impacting the Down syndrome community!

Weโ€™re so grateful to everyone who made this event possible, for attendees who showed up to help move the needle, and for everyone who took action on our policies priorities from home! Weโ€™re proud to play a role in amplifying the voices of this community.

Didnโ€™t get to join us in person but still want to use your voice and make a difference? Visit ndss.org/ndss-action-alerts to learn about the policies we advocated for on Capitol Hill and write to your members of Congress about them!

05/10/2026

Happy Motherโ€™s Day to all of the moms and mother figures in our community! ๐Ÿฉต๐Ÿ’› We hope you feel loved and cherished today and every day.

05/09/2026

The National Down Syndrome Society Bright Future Fund Scholarship is here to support individuals with Down syndrome as they pursue college and job training. Whether youโ€™re taking the next step in post-secondary education or building new job skills, this opportunity is for YOU!

Applications will close on May 22nd at 11:59 PM. Apply at https://ndss.org/bright-future-fund

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1155 15th Street NW, Suite 540
Washington D.C., DC
20005