National Down Syndrome Society

NDSS is closed Friday, June 19 in recognition of Juneteenth. We will reopen Monday, June 22.

NDSS is thrilled to honor Dr. Kaoru Takasaki with our Charles J. Epstein Award for Early Stage Investigators in collaboration with the Trisomy 21 Research Society. 👏 This award recognizes emerging researchers whose work demonstrates exceptional promise and a deep commitment to improving the lives of individuals with Down syndrome and their families through science, discovery, and collaboration.

Dr. Charles J. Epstein was a pioneering physician-scientist and one of the most influential leaders in the field of Down syndrome research. Beyond his scientific contributions, Dr. Epstein was known for his deep humanity, mentorship, and belief that research should ultimately serve individuals and families.

Dr. Takasaki's research focuses on understanding the biological mechanisms underlying blood disorders in infants and children with Down syndrome. Her work reflects the kind of thoughtful, innovative, and impactful science that advances both scientific understanding and meaningful outcomes for the Down syndrome community. We extend a heartfelt thank you and congratulations to Dr. Takasaki!

The Department of Education has announced that it plans to move responsibility for special education and vocational rehabilitation programs and civil rights enforcement to different federal agencies. NDSS remains opposed to any efforts to undermine the work of the Department of Education and its work to provide a free appropriate public education free from discrimination to students with Down syndrome and other disabilities.

We know the special education system is not perfect, and there is still work to do to improve outcomes for students with disabilities. However, moving special education oversight and civil rights enforcement to other agencies is not the solution. These changes risk creating confusion, disrupting services, and making it harder for schools and families to navigate the supports students rely on.

We need your advocacy to help stop these harmful changes to the way special education programs are administered. Use our Action Alert below to contact your Members of Congress and urge them to protect special education programs at the Department of Education.

https://ndss.quorum.us/campaign/164911/

Today we remember Zion Sarmiento, who would have turned five years old today. Zion was born on June 15, 2021, with Down syndrome and a congenital heart defect. Zion spent 40 days in the NICU and underwent five open-heart surgeries. Sadly, he did not receive the lifesaving heart transplant he needed, and passed away on October 8, 2021.

Following this tragic loss, Zion’s family founded “Zion’s Army”—a movement that celebrates the lives of individuals with Down syndrome, supports families experiencing child loss, and advocates for the Down syndrome community.

Zion’s story highlighted the serious issue of organ transplant discrimination and has motivated elected officials across the country to better protect individuals with disabilities. His story continues to drive support for the Charlotte Woodward Organ Transplant Discrimination Prevention Act, which passed the U.S. House of Representatives and will be voted on by the Senate Health, Education, Labor and Pensions (HELP) Committee this week.

We honor Zion’s legacy in a special way today, and stand with Zion's Army in the pursuit of a more just and inclusive world for individuals with Down syndrome.

This spring, competed in Dragon Boat races in Washington, D.C., and Philadelphia, PA. 🛶🐉

Special thanks to Schneider Electric and Montgomery County Down Syndrome Interest Group of PA (MCDSIG) for their generous sponsorship! Your support empowers our athletes, strengthens NDSS' mission, and helps us continue to show the world what individuals with Down syndrome are capable of!

Big news! CARE Down Syndrome is now featured on AMA Ed Hub, the American Medical Association’s online learning platform. 🎉

CARE Down Syndrome is an initiative from the National Down Syndrome Society that empowers healthcare professionals with knowledge and resources to meet the unique healthcare needs of adults with Down syndrome to help support informed, high-quality care.

The education featured on AMA Ed Hub includes free, CME-accredited content covering key topics such as Alzheimer’s disease, mental health, and other common health conditions. Be sure to share, visit AMA Ed Hub and enroll in CARE Down Syndrome today! https://edhub.ama-assn.org/national-down-syndrome-society

Father's Day is just around the corner! Show appreciation for the dads and father figures who help their loved ones thrive with some NDSS merch! Our THRIVE collection features sizes for the whole family and supports NDSS' mission. 💙💛

Shop NDSS at https://ndssorg.myshopify.com

BIG NEWS! 📢 The Senate HELP Committee will hold a markup on June 17 to vote on the Charlotte Woodward Organ Transplant Discrimination Prevention Act!

Charlotte’s bill will protect the rights of individuals with disabilities in the organ transplant system. We need YOU to contact your Senators using the link below and let them know why this legislation is so important for the Down syndrome and broader disability community.

👉 https://ndss.quorum.us/campaign/111217/

Thank you to our partners Global Down Syndrome Foundation for their work to advance the DeOndra Dixon INCLUDE Project Act, which recently passed out of the House Energy and Commerce Committee! 👏