YADSA Administrator 
The Dan Piper Award is given by NDSS to an adult with Down syndrome who brings about greater public awareness and understanding of individuals with Down syndrome through everyday activities. Does that sound like someone you know? Nominate them by July 21st at ndss.org/dan-piper-award!
Apply by July 29 at 11:59 PM ET for an opportunity to receive one of two $10,000 grants to help start your own business or invest in your current company! Applicants must have Down syndrome, be 18 years or older, own or be getting ready to start a business, and be a resident of the United States.
Apply at https://ndss.org/…/ndss…/
June is Alzheimer’s Disease and Brain Awareness Month, a time to raise awareness about Alzheimer’s disease and promote brain health. Chromosome 21 plays a key role in the relationship between Down syndrome and Alzheimer’s disease, as it carries a gene that produces one of the key proteins involved with changes in the brain caused by Alzheimer’s disease.
Down syndrome occurs when an individual has a full or partial third copy of chromosome 21. Typically, people have two copies of each chromosome. Chromosome 21 plays a key role in the relationship between Down syndrome and Alzheimer’s disease as it carries a gene that produces one of the key proteins involved with changes in the brain caused by Alzheimer’s. Additionally, scientists have located several genes on chromosome 21 that are involved in the aging process and that contribute to the increased risk of Alzheimer’s disease. It is this unique property of chromosome 21 that makes the disease a more acute concern for people with Down syndrome than those with other forms of intellectual disability.
For more information check out NDSS’ free Alzheimer’s Disease and Down Syndrome Guidebook.
The 7th annual AcceptAbility Gala attracted a record-breaking 400 attendees and raised a stunning $450,000! The gala brings together policymakers from both sides of the aisle, key scientists from NIH, corporate sponsors with BIG hearts, celebrities, and the Down syndrome community for a night of inspiration.
Thank you to all affiliates who helped make this year’s advocacy conference a tremendous success!
With over 400 attendees resulting in over 200 legislative meetings, our community made meaningful legislative change on the national level. We are so grateful for the support and leadership of affiliates across the country empowering our community to advocate and share their voices with their federal legislators.
The momentum we’ve built together doesn’t stop here. Keep advocating in your local communities, continue those important conversations with your representatives, and stay connected with us throughout the year.
Mark your calendars for May 11-12, 2026, for our 2026 NDSS Down Syndrome Advocacy Conference and stay tuned for more details! Until then, thank you for being powerful advocates for our community’s needs.
Budget reconciliation, a special legislative process, is underway in Congress. As a result of the passionate advocacy from the disability community, a number of proposals that would have drastically changed the way Medicaid is financed did not make it into the current bill. Our collective advocacy has made a significant difference, but it is not over yet!
The House of Representatives has passed a bill that would make several changes to Medicaid, including:
· Limiting ways for states to pay for their share of Medicaid
· Reducing Medicaid’s retroactive coverage
· Instituting work requirements for some Medicaid recipients
While the bill seeks to exempt individuals with disabilities from some of these changes, we remain concerned that these proposals would have unintended consequences for those with Down syndrome and other disabilities.
The bill will now go to the Senate for a vote. Now is a critical time to make your voice heard! Please share our action alert with your families.
NDSS has been engaging directly with Congressional offices, developing resources, and distributing letters to highlight the unintended negative impacts these proposals could have on individuals with Down syndrome and other disabilities. We are currently collecting stories from individuals with Down syndrome and their families about how Medicaid services impact their daily lives. These firsthand accounts help legislators at the state and federal levels understand the real-world importance of the programs they’re making decisions about. If you know of someone with a story or if your organization is impacted by Medicaid funding, please share our survey here!
SAVE THE DATE! 
Date: Saturday, October 4, 2025
Time: 11:00 AM – 3:00 PM
Place: John Rudy Park
20th year for the Buddy Walk and boy do we plan to celebrate BIG. We are coming back bigger than before; with more activities, more prizes and more fun. So, get your team together, pick your team name and get ready to come together as a community and have a blast. Look forward to team giveaways leading up to the walk, as well as prizes for the largest team and largest team donation. Will your team earn the opportunity to hold our Buddy Walk banner and lead the walk?
May is National Women’s Health Month—a time to focus on quality healthcare and healthy habits for women. Check out the NDSS Primary Care Provider’s Guide to Women’s Health and Down Syndrome. We encourage you to share this free resource with your providers and use it to learn more about women’s health.
The NDSS Partnering for Career Success guide is a free resource that provides advice for both employers and individuals with Down syndrome interested in pursuing competitive integrated employment in their community. It covers career exploration choices, workplace best practices, self-advocate testimonies, and more.
