Raise your hand if you got snow already this winter!
NDSC has plenty in store for December, including welcoming some new staff members! Read on for information on a brand new Virtual Educators Conference, December Spanish webinar, and more. |
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Rachel Dekom lives in Atlanta, Georgia, where she brings her passion for community and connection to her role at NDSC. As Development Coordinator, Rachel leads NDSC's signature fundraising events such as the Big Game Ball and the National Down Syndrome Golf Classic, building lasting relationships with sponsors, donors, and volunteers. Through her work, she helps raise essential resources to support NDSC’s mission.
Rachel has spent her career in Atlanta’s nonprofit community, curating donor experiences that bring people together around a shared purpose. She’s passionate about translating an organization’s mission into engaging events that connect folks and drive meaningful change. Rachel is proud to be part of NDSC’s work and is always looking for new ways to make fundraising both human-centered and fun.
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Olivia recently graduated from the University of Cincinnati with a Bachelor of Business Administration, concentrating in Entrepreneurship. During her time at UC, she worked with IMPACT, a year-round program for adults with autism, as well as Transition and Access Pathways (TAP), a full-time, four-year college experience for students with intellectual and developmental disabilities (IDD). She also completed an internship with the Down Syndrome Association of Greater Cincinnati (DSAGC) and Make-A-Wish Ohio, Kentucky, Indiana (OKI).
Most recently, Olivia served as the Health and Wellness Manager for Buddy Up for Life, a national nonprofit providing adaptive programming for individuals with Down syndrome. Olivia’s passion for this work is deeply personal and inspired by her best friend and younger brother, Brady, who is 17 and has Down syndrome. Together, they enjoy everything from cheering on their favorite sports teams to taking their dog, Betty, on walks around the neighborhood. |
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Gifts & Challenges Exchange - caregiver conversations and support for those supporting adults with Down syndrome age 30+
Family engagement sessions for parents and caregivers of adults with Down syndrome 30 and older. These are facilitated group discussions led by Dr. Dennis McGuire, covering a range of relevant topics.
Each session will emphasize shared conversation and peer support. December session: TODAY Dec. 4 at 1 PM EST Attendance for each Zoom conversation will be limited to 50 people. |
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Join the mailing list to receive the link to register for the Zoom meeting. If you have questions, reach out to info@ndsccenter.org. |
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| We are taking our Educators Conference to the World Wide Web!
Virtual Educators Conference Saturday, February 7, 2026 10:00 AM EST - 3:30 PM EST
Open worldwide* *Presented in English. Translation available in multiple languages through Zoom closed captioning. |
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Edades y etapas
Descubrimientos científicos importantes que benefician a las personas con síndrome de Down Dr. Joaquín Espinosa, Universidad de Colorado Anschutz Miércoles 10 de diciembre 2025 12 PM EST, 11 AM CST, 10AM MST, 9AM PST Seminario GRATUITO de NDSC |
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Introducing…. The National Down Syndrome Congress Down Syndrome Policy Summit and Hill Day!
NDSC is proud to announce that September 29 - 30, 2026 we will be hosting the Down Syndrome Policy Summit at the Omni Hotel in Washington, DC! This event will feature one full day of advocacy training, where advocates will take crash courses on policy and speaking with elected officials and their staff. The next day is a Hill Day. Advocates will take to Capitol Hill where they will meet with their elected officials and staffers to advocate for policy that directly affects people with Down syndrome.
Mark your calendars! Registration opens this May 2026.
We cannot wait for you to #AdvocateWithUs!
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The driving force behind our hard work and dedication is our passion for all the children and adults with Down syndrome across the country that we serve. Our belief that we are making a difference in numerous lives keeps us energized and motivated to continue our efforts. |
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We’re just eight states away from having an NDAC member with Down syndrome in all 50 states. We believe the most powerful voices are those of individuals living with Down syndrome. If you or someone you know is a passionate self-advocate from one of our remaining states and interested in policy and advocacy, we’d love to connect! - Alaska
- Hawaii
- Maine
- Montana
- New Hampshire
- New Mexico
- Rhode Island
- Vermont
Become an NDAC member today! |
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November 29th marked the 50th anniversary of the Individuals with Disabilities Education Act (IDEA). Before IDEA, an estimated 1.75 million children with disabilities were excluded entirely from schools, and many thousands more were segregated in institutions. Since its passage, IDEA has guaranteed millions of people the right to a free appropriate public education in the least restrictive environment. On December 3, 2025, Micah Rothkopf, NDSC Policy & Advocacy Assistant, represented NDSC at a 50-year anniversary event hosted by Senator Bill Cassidy (R-LA), with Senator Chris Van Hollen (D-MD) offering remarks on this historic milestone.
As we commemorate half a century of progress, NDSC remains keenly aware that federal enforcement and supports are currently under threat and efforts move forward to dismantle the U.S. Department of Education. We also recognize that many students, especially Black and indigenous students, students from low-income families, and those in rural communities, still are not receiving an education that reflects the full promise of IDEA.
We have come a long way since 1975, but there is still far to go.
You can help shape the next 50 years of IDEA. Use NDSC’s action alert to send a personalized message to your elected officials about how IDEA has impacted you or someone you know.
For a plain language video explaining what is happening at the Department of Education, watch Stephanie Smith Lee, NDSC Co-Director of Policy and Advocacy, in conversation with Liz Weintraub on Disability Policy For All. |
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The ABLE Act Turns 11 Years Old!
December 19 marks the 11th anniversary of the signing of the Achieving a Better Life Experience (ABLE) Act — the 2014 federal law that created tax-advantaged savings accounts (ABLE accounts) under Section 529A of the Internal Revenue Service Tax Code for individuals with significant disabilities. ABLE accounts, which can be used for a wide range of “qualified disability expenses,” including housing, healthcare, assistive technology, education, transportation, and employment-related support, allow eligible people to save and invest without jeopardizing access to critical public benefits such as Supplemental Security Income (SSI) or Medicaid. For 2026, ABLE account owners can save up to $19,000 per year (more if the account owner is working and does not participate in a workplace retirement plan).
There are now 49 state-run ABLE programs across the country, most of which are open to eligible individuals regardless of their state of residence. As of June 2025, more than 214,000 ABLE accounts had been opened nationwide with $2.68 billion in assets under management. The average account balance is $12,530. This number will grow with the upcoming implementation of the ABLE Age Adjustment Act which becomes effective January 1, 2026. Under the new law, individuals whose disability onset occurred before age 46 (instead of the prior limit of age 26) will be eligible to open an ABLE account. This change will enhance the financial security and independence of millions more Americans whose disabilities begin later in life — including many veterans and adults who acquire disabilities through illness or injury.
As we celebrate the ABLE Act’s legacy, we also want to highlight the need for continued improvements to ABLE laws and programs to enhance their flexibility and usefulness for people with disabilities. One proposed improvement currently before Congress is the ABLE Employment Flexibility Act (S.2459/ H.R. 4644), which would allow employers to contribute to ABLE accounts in lieu of retirement account contributions. We encourage you to reach out to your Senators and U.S. Representative and ask them to cosponsor this bipartisan bill. You can learn more about ABLE accounts, including comparing different ABLE plans, at the ABLE National Resource Center.
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National Down Syndrome Congress provides easy and accessible ways to engage your elected officials. When new and important legislation is introduced in the U.S. House of Representatives or the U.S. Senate or more support is needed for existing bills, we will notify you and request that you contact your Members of Congress. One simple way you can advocate is to register for NDSC’s Action Alerts. Action Alerts are template emails with information about the legislation and talking points that you can forward directly to your Members of Congress.
Sign up for Action Alerts today and take action to raise the voices of those in our community. |
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Orlando, Florida | Hilton Signia
July 23 - 26, 2026 Now featuring the DSAIA Pre-Con July 22 - 23, 2026 Registration opens: March 10, 2026 |
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The driving force behind our hard work and dedication is our passion for all the children and adults with Down syndrome across the country that we serve. Our belief that we are making a difference in numerous lives keeps us energized and motivated to continue our efforts. |
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As you thoughtfully consider giving to our annual campaign, please know that your generosity is tied to who we serve, and they are why we do what we do.
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