National Down Syndrome Society

National Down Syndrome Society 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.

08/25/2026

“When I first met Koji – I was blown away by his enthusiasm, his zest for life, and his engaging and charismatic presence. Koji has a sense of adventure that reminds me of how exciting life can truly be.

At the same time I met Koji, I met Dr. Thomas Buckley and The Roland Center (TRC) team. The Roland Center is a Southern California-based provider, offering a full spectrum of community-based supports for individuals with IDD. TRC’s specific focus under the leadership of Dr. Buckley, is providing complex and nuanced services tailored specifically to an individuals’ diagnosis and circumstances, with the aim of maximizing their quality and longevity of life.

I was invited to join TRC’s team and create a documentary about Koji, who with the support of Dr. Buckley and his wife Kathy, was about to embark on one final international voyage to Hong Kong, to be reunited with his remaining, living, family. What made Koji’s story special is that he was able to embark on this adventure – despite living with both Down syndrome and Alzheimer’s disease. Koji’s story emphasizes the fact that life shouldn’t end prematurely for people due to a diagnosis. It is our duty as support providers to educate and empower ourselves to the degree that Koji’s story is not the exception, but the rule.

Koji’s film, ‘The Last Stamp’, is a story of hope, dignity and resilience, that we at TRC hope inspires individuals, caregivers, providers, advocates and policymakers to pursue and fight for, what is right over what is easy.
As the Director of Communications & Advancement at The Roland Center, and the Director/ Producer of ‘The Last Stamp’, it has been my honor to assist Koji with sharing his story.

The film is currently touring nationally and is also available for short term streaming, by way of donation, on the film’s webpage at www.thelaststampfilm.com (link in bio).

For more information about The Roland Center, please visit: www.therolandcenter.org.”

🧠 Join NDSS and Dr. Beau Ances, a neurologist and leading researcher at Washington University in St. Louis, on 𝗦𝗲𝗽𝘁𝗲𝗺𝗯𝗲𝗿...
08/24/2026

🧠 Join NDSS and Dr. Beau Ances, a neurologist and leading researcher at Washington University in St. Louis, on 𝗦𝗲𝗽𝘁𝗲𝗺𝗯𝗲𝗿 𝟭𝟱, 𝟮𝟬𝟮𝟲 𝗳𝗿𝗼𝗺 𝟲:𝟬𝟬-𝟳:𝟯𝟬 𝗣𝗠 𝗘𝗧, as he shares about current clinical trials in Down syndrome-associated Alzheimer’s disease (DS-AD).

Gain a clearer understanding of why clinical research matters, what participation in upcoming clinical trials will involve, why families choose to participate, and why researchers are optimistic about the future of DS-AD research.

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

We're excited to announce Monika Myers will be joining NDSS at the 2026 NYC Buddy Walk! 🥳Monika Myers is a trailblazing ...
08/20/2026

We're excited to announce Monika Myers will be joining NDSS at the 2026 NYC Buddy Walk! 🥳

Monika Myers is a trailblazing Canadian model, actor, speaker, and advocate who is inspiring the world through her talent, determination, and message of inclusion. At age 14, Monika became Canada’s first professional runway model with Down syndrome and has since walked runways in Toronto, New York, and Paris while appearing in international publications. Monika made her feature film debut as Lady Diana in Reminders of Him from Universal Pictures, earning praise for her performance and comedic timing.

As a passionate advocate and ambassador for inclusion, Monika uses her voice to inspire change and empower others. She has delivered the keynote address for the United Nations World Down Syndrome Day conference, where she shared her journey and her message that every person has the ability to achieve their dreams when given the opportunity. Through her initiative, I AM BRAVE AND BEAUTIFUL, Monika inspires others to embrace their uniqueness, believe in themselves, and pursue their dreams.

Register at the link below to join us at the Walk on Saturday, September 12!
🗽https://ndss.org/nyc-buddy-walk-tsv

– Meet Kay! “When I think about what it means for Kay to thrive, I think about the small moments that might seem ordin...
08/17/2026

– Meet Kay!

“When I think about what it means for Kay to thrive, I think about the small moments that might seem ordinary to someone else, but to our family are reminders of just how strong and incredible she is.

Kay is 5 years old and has Down syndrome, autism, hearing loss, and type 1 diabetes. She has faced challenges that many people will never understand, but she continues to show us what strength, courage, and determination look like.

Kay was diagnosed with type 1 diabetes in 2024. She wears a continuous glucose monitor and an insulin pump every day. These devices are a constant reminder that diabetes is always part of her life, but she has never let it stop her from being a joyful, funny, loving little girl.

There are moments when I look at her and think, ‘Wow… she is amazing.’ She handles pokes, alarms, changes, and the emotions that come with diabetes with a level of bravery that I am not sure I would have at her age and has taught our family that strength doesn’t always look big or dramatic. Sometimes it looks like getting up every morning and continuing to be yourself, even when life asks more of you than it should.

Kay is also lucky to have her furry best friend, Maeve, by her side. Maeve helps support Kay’s safety and gives her comfort through extra snuggles and companionship. Their bond is a beautiful reminder that support can come in many forms and that Kay is surrounded by people and animals who believe in her.

Kay is preparing for kindergarten and continues to surprise us with everything she accomplishes. She was recently chosen to be featured in the NDSS Times Square Video Presentation, an honor that celebrates who she is and the impact she has already made. Being part of this community and participating in the NYC Buddy Walk allows us to celebrate Kay, stand alongside families who understand inclusion and acceptance, and reminds us that every person with Down syndrome has a story worth sharing.

Kay’s story isn’t just about challenges, but joy, courage, love, and a little girl who continues to show the world that she belongs exactly as she is.” – Jessica Drake, Kay’s mom

We're thrilled to announce that NDSS is an official charity partner of the Sanlam Cape Town Marathon, the 8th Abbott Wor...
08/17/2026

We're thrilled to announce that NDSS is an official charity partner of the Sanlam Cape Town Marathon, the 8th Abbott World Marathon Major and the first Major ever in Africa!

Apply for your chance to run with in the Sanlam Cape Town Marathon on 𝗦𝘂𝗻𝗱𝗮𝘆, 𝗠𝗮𝘆 𝟮𝟯, 𝟮𝟬𝟮𝟳, and be part of this unforgettable inaugural Major experience. Our spots are limited, so don’t wait to secure your place!

🥇 Find race details and apply at https://ndss.org/cape-town-marathon

NDSS and Voya Cares®️ Entrepreneur Grants applications are open! 🎉𝗧𝘄𝗼 $𝟭𝟬,𝟬𝟬𝟬 𝗴𝗿𝗮𝗻𝘁𝘀 𝗮𝗿𝗲 𝗮𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝘁𝗼 𝗶𝗻𝗱𝗶𝘃𝗶𝗱𝘂𝗮𝗹𝘀 𝘄𝗶𝘁𝗵 𝗗...
08/13/2026

NDSS and Voya Cares®️ Entrepreneur Grants applications are open! 🎉

𝗧𝘄𝗼 $𝟭𝟬,𝟬𝟬𝟬 𝗴𝗿𝗮𝗻𝘁𝘀 𝗮𝗿𝗲 𝗮𝘃𝗮𝗶𝗹𝗮𝗯𝗹𝗲 𝘁𝗼 𝗶𝗻𝗱𝗶𝘃𝗶𝗱𝘂𝗮𝗹𝘀 𝘄𝗶𝘁𝗵 𝗗𝗼𝘄𝗻 𝘀𝘆𝗻𝗱𝗿𝗼𝗺𝗲 𝘄𝗵𝗼 𝘄𝗮𝗻𝘁 𝘁𝗼 𝘀𝘁𝗮𝗿𝘁 𝘁𝗵𝗲𝗶𝗿 𝗼𝘄𝗻 𝗯𝘂𝘀𝗶𝗻𝗲𝘀𝘀 𝗼𝗿 𝗶𝗻𝘃𝗲𝘀𝘁 𝗺𝗼𝗿𝗲 𝗰𝗮𝗽𝗶𝘁𝗮𝗹 𝗶𝗻 𝘁𝗵𝗲𝗶𝗿 𝗰𝗼𝗺𝗽𝗮𝗻𝘆.

Eligibility Criteria:
Have Down syndrome
Be 18 years of age or older
Own a business or is starting their own business
Be a resident of the United States

Applications are due by 𝗦𝗲𝗽𝘁𝗲𝗺𝗯𝗲𝗿 𝟯𝗿𝗱 𝗮𝘁 𝟭𝟭:𝟱𝟵 𝗣𝗠 𝗘𝗧. Apply today at ndss.org/ndss-voya-entrepreneur-grants

Help us extend a massive congratulations to the 2026 Dan Piper Award Recipient, Leo A. Weeks! 🥳 The Dan Piper Award was ...
08/12/2026

Help us extend a massive congratulations to the 2026 Dan Piper Award Recipient, Leo A. Weeks! 🥳 The Dan Piper Award was established to commemorate self-advocate Dan Piper’s life by celebrating an adult with Down syndrome who, through everyday activities, brings about greater public awareness and understanding of people with Down syndrome in their community.

Leo A. Weeks, 23, of Herndon, Virginia, is an accomplished advocate, employee, and community leader. An Eagle Scout and Order of the Arrow member, Leo also graduated high school with academic honors and went on to excel in the STEP post-secondary program, receiving workplace awards during internships at Brightview Senior Living and the United States Geological Survey. Today, he works as a paid usher at a performing arts center and has performed on stage, including at the Kennedy Center Opera House. Leo is a 4th Degree Honor Guard and elected officer in Knights of Columbus. Leo believes, "All people with Down syndrome have gifts to give to their communities. We just need to be ourselves and get involved."

Leo's photo will be in this year's Times Square Video Presentation and he will be presented with the award on stage at the New York City Buddy Walk® on September 12! Sign up to join us at https://ndss.org/nyc-buddy-walk-tsv

NDSS staff had an incredible time at Summer Double Dip last weekend! 🙌 We are incredibly grateful to NDSS Board Member A...
08/11/2026

NDSS staff had an incredible time at Summer Double Dip last weekend! 🙌 We are incredibly grateful to NDSS Board Member Anthony Providenti and his family for hosting such a fun event benefitting the Down syndrome and broader disability community!

NDSS is headed back to Yankee Stadium on Sunday, September 13 for the Yankees v. Mets to close out the 2026 NYC Buddy Wa...
08/10/2026

NDSS is headed back to Yankee Stadium on Sunday, September 13 for the Yankees v. Mets to close out the 2026 NYC Buddy Walk® weekend! ⚾

T-shirts are available as a separate purchase and the deadline to guarantee a shirt in your size is 𝗦𝘂𝗻𝗱𝗮𝘆, 𝗔𝘂𝗴𝘂𝘀𝘁 𝟭𝟲. The last day to purchase tickets in NDSS' section is 𝗦𝘂𝗻𝗱𝗮𝘆, 𝗦𝗲𝗽𝘁𝗲𝗺𝗯𝗲𝗿 𝟲 𝗼𝗿 𝘂𝗻𝘁𝗶𝗹 𝘀𝗲𝗹𝗹 𝗼𝘂𝘁! Purchase your tickets and t-shirts at https://ndss.org/nyc-buddy-walk-tsv

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

Telephone

+18002214602

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