National Down Syndrome Society

URGENT ADVOCACY NEEDED! Three of NDSS' top legislative priorities will be voted on by the full House of Representatives TODAY, September 23rd!

We need you to tell your Representatives to vote YES 🗳️ on the:

✔️Charlotte Woodward Organ Transplant Discrimination Prevention Act
✔️NAPA Reauthorization Act
✔️Congenital Heart Futures Reauthorization Act

Make your voice heard here:
https://ndss.org/ndss-advocacy-alerts

Did you miss our latest webinar on Down Syndrome Regression Disorder with Dr. Santoro? No problem! Watch it any time at youtu.be/tQUvKBjfL0E?si=cddezn42g9Dx2dgd. 💛💙

Congress has been busy and so have we! 💥 This week was a monumental week for the Down syndrome community on Capitol Hill.

⏩ Swipe to learn more about NDSS President & CEO Kandi Pickard’s testimony at a Congressional roundtable, important legislative updates, and the second annual CEO Commission for Disability Employment Hill Day.

🏛️ As the end of the 118th Congress approaches, it is more important than ever that your elected officials hear from you on these important issues. Click the link below to make your voice heard today!

https://ndss.org/ndss-advocacy-alerts

Help us welcome Heather Rodriguez to the NDSS team! 🥳

Heather is the Manager of Community Resources at NDSS, where she manages and shares resources to support and cultivate relationships within the Down syndrome community. Heather provides direct assistance by responding to helpline calls or emails while ensuring families have access to relevant resources and local support. Heather joins NDSS with more than 13 years of experience working and volunteering in the Down syndrome community, including seven years at GiGi’s Playhouse Inc. Most recently, Heather worked at C&S Companies building their digital media presence.

🎉 ICYMI, NDSS created the 𝘗𝘳𝘪𝘮𝘢𝘳𝘺 𝘊𝘢𝘳𝘦 𝘗𝘳𝘰𝘷𝘪𝘥𝘦𝘳'𝘴 𝘎𝘶𝘪𝘥𝘦 𝘵𝘰 𝘞𝘰𝘮𝘦𝘯'𝘴 𝘏𝘦𝘢𝘭𝘵𝘩 𝘢𝘯𝘥 𝘋𝘰𝘸𝘯 𝘚𝘺𝘯𝘥𝘳𝘰𝘮𝘦, a resources that aims to educate PCPs about the nuanced health care needs of women with Down syndrome. The guide is intended for medical professionals, but we highly encourage caregivers to gain familiarity with the guide and the topics covered and share it with their loved one's provider!

💥 We're hosting a 𝗳𝗿𝗲𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 with Dr. Hannah Graham, the guide's author, who will give an overview of the guide, discuss similarities and differences for women with Down syndrome when it comes to their health care needs, and highlight key strategies when providing care. Topics covered will include menstruation, PMS, HPV vaccines, cancer screening, pelvic exams, birth control, and menopause.

👉 Register to join us on October 8th at 2 PM ET at https://us02web.zoom.us/webinar/register/WN_oS4hsoHYSW-Pgu7rKNMMSg. Can't make it at that time? No problem! The webinar will be recorded and sent out to registrants.

🌟 Meet this year’s Brandon Gruber Scholarship recipients: Joel Jamensky and Blake Edwards! The Gruber family is excited to support these talented individuals as they chase their dreams in the arts.

🎨 Joel, the creative mind behind Art By J Positive, will use his scholarship to stock up on supplies and keep making a positive impact through his visual art.

💃 Blake is one step closer to her dream of opening her own Arts Academy! Thanks to this scholarship, she’ll continue her mentorship with a dance studio owner and work towards obtaining her business license.

Congratulations to Joel and Blake—your passion is inspiring!

- Meet Christopher Bennett!

“I’m the younger son with Down syndrome of Merilee and Bruce Bennett of Santa Rosa, Napa Valley, Northern CA. I’m the younger brother of White House press journalist Brian Bennett.

I studied American government, presidents, and vice presidents and ran for student government from 1996 to 2003. I am a former NDSS Advisory Board member and self-advocate. I was awarded the President’s Education Awards Program for Outstanding Educational Improvement of the United States in 2007 by former President Bill Clinton.

I was appointed to serve on the State of California Council on Developmental Disabilities and the Napa County Board of Supervisors. I was a State Senate intern in California from 2005 to 2008 and worked with San Francisco Attorney General Kamala Harris. I graduated from the Partners in Policy Making program of the Arc of California in 2007.

I volunteered for the Napa County Elections and campaigns from 2008 to 2009. I am a former board member of NDSC’s Board of Directors and a self-advocate council member. I interned with the U.S. Congress and volunteered for the Mike Thompson for U.S. Congress campaign in August 2024.

I was appointed to serve on the City of Napa City Council as a Disability Access Board of Appeals member on August 20, 2024. I appeared in the Napa Valley Register with a U.S. Congressman on June 2, 2024. I would like to be a White House guest speaker at the White House Disability Pride, ADA Act, and Rehabilitation Act events. I aim to be a Capitol Hill advocate for disability legislation for Americans with disabilities and Down syndrome.

My future goals include running for Vice President. I encourage libraries to restock their resource books on Down syndrome for new parents and families and to update past legislation for our country and our nation, for everyone, including the disability and Down syndrome communities.”

Are you familiar with Down Syndrome Regression Disorder (DSRD)?
👉 It's an emerging condition where individuals rapidly lose language, communication abilities, and developmental skills over a period of weeks to months without a clear cause.

👩‍💻 Join our webinar with Dr. Santoro on Tuesday, September 17 at 7 PM ET to learn the signs and symptoms of DSRD, the recommended workup for the condition, and treatment options.

🎦 The webinar will be recorded and sent out to registrants. Register at https://us02web.zoom.us/webinar/register/WN_-yp0jcJhSUyKG8Ba5AxVMA #/registration.

Mark your calendars and join us for next year's NYC Buddy Walk® on September 6, 2025! 🗽

📸 The applications to submit a photo for the Times Square Video presentation will open spring 2025! Keep an eye on our social media and sign up for our newsletter at the link below to make sure you don't miss the application deadline.

ndss.org/ndss-newsletter

This time last week, we were gearing up to for the 30th NYC Buddy Walk®! 🗽💛 It was an incredible day celebrating with those of you who were able to join us in person and those who supported from afar. We're grateful for all of our sponsors, exhibitors, volunteers, photographers, videographers, and everyone who helped make the 30th NYC Buddy Walk® one for the books!

📅 Don't forget to mark your calendars for next year's NYC Buddy Walk® on September 6, 2025!

We want to extend our heartfelt gratitude to Voya Financial for being the Presenting Sponsor of the 2024 NYC Buddy Walk®. 🧡 Your support was instrumental in making this event a success and in celebrating individuals with Down syndrome and their families. Thank you for your generosity and commitment to our community! 💛💙

Yesterday, NDSS team members and members of the Down syndrome community attended a reception in honor of the 34th anniversary of the Americans with Disabilities Act. We are grateful for the White House for including individuals with Down syndrome in this celebration.

The Mets may have lost, but NDSS won! What a phenomenal close to the 30th NYC Buddy Walk weekend. 💙💛 Thank you to everyone who helped make this such a memorable Buddy Walk.

📆 Let’s do it again! Mark your calendars for next year’s Buddy Walk on September 6, 2025! 🗽🌆

Celebrating the Down syndrome community with the Mets!🧡💙🧡💙

2024 Times Square Video

We'll be together to support and celebrate our amazing community at the 30th NYC Buddy Walk® come rain or shine! Please check the forecast and be prepared with a rain jacket, umbrella, and/or sunscreen! 🎉

Don’t forget, you can register in-person the day of the event. We can't wait to see you there! 🗽💛

Don't miss your chance to attend an NDSS event while we're on the west coast! ✈️

🔹 The NDSS Adult Summit will provide information and practical resources for adults with Down syndrome, families, caregivers, and professionals on topics like financial wellness, Alzheimer's disease, caregiving, mental health, and more!

🔸 A modified track, ideal for teens and adults with Down syndrome and others who prefer an environment with more guided supports, accommodations, and experiential learning opportunities will be provided.

Register at ndss.org/adult-summit.

NDSS is closed Monday, September 2nd in honor of Labor Day. We will reopen Tuesday, September 3rd.