NDSS Down Syndrome Advocacy Conference

Elevate your Advocacy Impact

Transform your advocacy approach with our signature pre-conference bootcamp experience on Monday, May 11th. This exclusive offering features specialized, in-depth sessions designed to strengthen your advocacy foundation across four critical policy areas:

• Employment & Policy
• Health and Wellness & Policy
• State Policy and Advocacy
• Education & Policy

Each intensive session will demonstrate strategic connections between NDSS resources and multi-level policy frameworks, empowering you to drive meaningful change from local communities to federal initiatives. Further details on session topics, agendas, and speakers will be updated and shared with all registered attendees as we approach the conference.  

Registration Information:

• Pre-Conference Bootcamp requires additional registration
• Individuals with disabilities have access to the Pre-Conference Bootcamp within their registration
• Additional registration required for childcare available for children ages 6-11

The General Conference track is recommended for individuals with Down syndrome ages 18+ who have previous advocacy experience and all parents, caregivers, siblings ages 18+, and all other attendees.  

The General Conference track includes:  

• Pre-conference webinar and materials
• Engaging keynote speaker and policy and advocacy general sessions on Tuesday, May 12
• Breakfast on Tuesday, May 12
• Champions of Change luncheon on Tuesday, May 12
• Evening reception on Tuesday, May 12, including one drink ticket
• Breakfast on Wednesday, May 13
• Transportation to Capitol Hill on Wednesday, May 13
• Pre-scheduled meetings on Capitol Hill on Wednesday, May 13

Please note: We encourage self-advocates with Down syndrome and sibling advocates ages 12 – 17 to consider attending the Modified Track, however, these participants may choose whichever track is best for them.

We offer a Modified Track designed with self-advocates in mind. This track is recommended for individuals with Down syndrome ages 12+ who wish to learn more about policy and advocacy basics and how to use their voice to advocate for change. Experienced self-advocates are encouraged to attend the General Conference track but are welcome to choose whichever track best fits their needs. Siblings aged 12 – 17 are also welcome to join this track if they prefer.

The Modified Track includes:

• Pre-conference webinar and materials
• Engaging keynote speaker and policy and advocacy sessions on Tuesday, May 12
• Breakfast on Tuesday, May 12
• Champions of Change Luncheon on Tuesday, May 12
• Evening reception on Tuesday, May 12, including one drink ticket
• Breakfast on Wednesday, May 13
• Transportation to Capitol Hill on Wednesday, May 13
• Pre-scheduled meetings on Capitol Hill on Wednesday, May 13 

Childcare will be available for children ages 6 – 11 on Monday, May 11th for the pre-conference bootcamp from 1 -5 PM ET and on Tuesday, May 12th from 8:30 AM- 3 PM ET. Childcare will not be provided on Wednesday, May 13th, and children are expected to accompany parents or caregivers on Capitol Hill or have separate childcare arrangements. The NDSS Down Syndrome Advocacy Conference is a family-friendly event, and families are encouraged to bring their children with them to Capitol Hill! Childcare tickets for May 11 and 12 are sold separately.

Childcare tickets for May 11 (the pre-conference bootcamp) include:

• Half day of engaging activities on Monday, May 11
• A snack

Childcare tickets for May 12 (the conference training day) include:

• Full day of engaging activities on Tuesday, May 12
• Breakfast, lunch, and a snack
• Access to the evening reception on Tuesday, May 12
• Breakfast on Wednesday, May 13
• Transportation to Capitol Hill on Wednesday, May 13
• Pre-scheduled meetings on Capitol Hill on Wednesday, May 13

Access our 2025 legislative priorities to see what we advocated for at the 2025 NDSS Down Syndrome Advocacy Conference. The legislative priorities for the 2026 NDSS Down Syndrome Advocacy Conference will be shared prior to the conference.

NDSS is proud to offer a limited number of scholarships each year to support passionate advocates who require financial assistance to attend the conference. These scholarships are crucial in ensuring representation and fostering inclusive dialogue at our event. Please check back soon for more information on scholarship opportunities for the 2026 conference.

NDSS is proud to bestow Champion of Change awards to individuals and organizations who advocate for the Down syndrome community in their local communities and at all levels of government. Awardees are nominated by peers and honored at the annual Down Syndrome Advocacy Conference in Washington, D.C.

Nomination applications will reopen soon for the 2026 Champion of Change Awards. NDSS is proud to bestow Champion of Change awards, sponsored by PhRMA, to individuals and organizations who advocate for the Down syndrome community in their local communities and at all levels of government. Awardees are nominated by peers and honored at the annual NDSS Down Syndrome Advocacy Conference in Washington, D.C. Congratulations to the 2025 winners listed below!

Stephen Beck Jr Advocate of the Year: Damon Kruppa
Individual Leader of the Year: Sarah Mai
Self-Advocate of the Year: Christopher Bennett
DS-Ambassador® of the Year: Dashiell Meier
Organization of the Year: Skills for Rhode Island's Future

NDSS offers the opportunity for advocacy organizations, service providers, self-advocate-owned businesses, and others to exhibit at the conference. Please check back soon for more information on exhibitor opportunities for the 2026 conference.