Registration for the 2025 Down Syndrome Advocacy Conference is now closed. Please email policy@ndss.org if you have any questions.
Join the National Down Syndrome Society (NDSS) for the annual Down Syndrome Advocacy Conference April 28 - April 30, 2025! This transformative three-day event brings together advocates, families, professionals, and individuals with Down syndrome to learn, connect, and inspire change on Capitol Hill. Immerse yourself in learning sessions, our community's legislative priorities, and gain valuable resources to empower the Down syndrome community.
Pre-Conference Bootcamp
Monday, April 28
Registration is open 12:00 PM – 5:00 PM at the Reception Desk
Childcare:
Check-in for childcare will begin at 12:30 PM in Studio A. Only a parent, guardian, or chaperone with written permission from a parent or guardian can check children in and out of the childcare room.
Participants ages 6 – 11 will remain in Studio A for the duration of the day, however, children can be checked out at any time. Once a child is officially checked out, they will not be permitted to return for the duration of the day. All children must be checked out by 5:00 PM.
Please note that snacks will be provided during the pre-conference day, but a meal will NOT be provided. Children are encouraged to eat lunch prior to arriving.
| Time | Bootcamp | Location |
|---|---|---|
| 12:00 – 5:00 PM | Registration Open | Reception Desk |
| 1:00 -1:45 PM | Employment Policy | Salons 1-4 |
| 1:45 -2:00 PM | Break | Salons 1-4 |
| 2:00 -2:45 PM | Health & Wellness Policy | Salons 1-4 |
| 2:45 -3:15 PM | Break/Exhibitor Fair | Exhibit Hall |
| 3:15-4:00 PM | Education Policy | Salons 1-4 |
| 4:00- 4:15 PM | Break | Salons 1-4 |
| 4:15-5:00 PM | State Policy Bootcamp | Salons 1-4 |
| 5:00-6:00 PM | DS-Ambassador® Happy Hour | See details below |
Active members of the NDSS DS-Ambassador® grassroots advocacy program are invited to join a members-only happy hour from 5:00 PM – 6:00 PM. Members of the program can refer to the invitation sent prior to the conference for more information. To learn more about the DS-Ambassador® program and apply, please visit www.ndss.org/be-an-advocate.
Legislative Training Day
Tuesday, April 29
Registration is open 8:00 AM - 12:00 PM at the Reception Desk
Childcare:
Check-in for childcare will begin at 8:30 AM in Studio A. Only a parent, guardian, or chaperone with written permission from a parent or guardian can check children in and out of the childcare room.
Participants ages 6 – 11 will remain in Studio A for the duration of the day, however, children can be checked out at any time. Once a child is officially checked out, they will not be permitted to return for the duration of the day. All children must be checked out by 3:30 PM.
Please note that lunch and a snack will be provided.
| Combined General and Modified Tracks | |||||
|---|---|---|---|---|---|
| Time | Session | Location | |||
| 7:00-9:00 AM | Breakfast Buffet Sponsored by ABC-DS | Salons 1-4 | |||
| 8:00 AM-12:00 PM | Registration Open | Reception Desk | |||
| 9:00-9:15AM | Opening Remarks | Salons 1-4 | |||
| 9:15-9:30AM | Track Breakout | General track attendees will remain in Salons 1 – 4. Modified track attendees will be escorted by staff and volunteers to Studio B. | |||
| General Track | Modified Track | ||||
|---|---|---|---|---|---|
| Time | Session | Location | Time | Session | Location |
| 9:30-10:45 AM | Policy and advocacy general sessions | Salons 1-4 | 9:30-10:45AM | Policy and advocacy modified sessions | Studio B |
| 10:45-11:15AM | Coffee break, Sponsored by Microsoft | Salons 1-4 | 10:45-11:15AM | Coffee break, Sponsored by Microsoft | Studio B |
| 11:15 AM-12:00 PM | Policy and advocacy general sessions | Salons 1-4 | 11:15 AM - 12:00 PM | Policy and advocacy modified sessions | Studio B |
| 12:00 PM | Modified track attendees rejoin general track attendees | ||||
| Combined General and Modified Tracks | |||||
|---|---|---|---|---|---|
| Time | Session | Location | |||
| 12:00-12:30PM | Buffet lunch | Salons 1-4 | |||
| 12:30-1:15PM | Join the NDSS team to celebrate and honor members of the Down syndrome community who exemplify outstanding advocacy.
Thank you to the 2025 sponsor of the Champions of Change Luncheon, Pharmaceutical Research and Manufacturers of America (PhRMA) | Salons 1-4 | |||
| 1:15-1:45 PM | Exhibitor Fair | Exhibit Hall | |||
| 1:45-3:00 PM | Planning for Capitol Hill (Guided Delegation Work Period) | Salons 1-4 | |||
| 3:00-3:30 PM | Exhibitor Fair | Exhibit Hall | |||
| Evening Reception and Dance Party | |||||
|---|---|---|---|---|---|
| Time | Details | Location | |||
| 4:30-6:00 PM | Celebrate the accomplishments of the Down syndrome community with a dance party! Drinks and light hors d'oeuvres will be provided. | Salons 1-4 | |||
Advocates are encouraged to get dinner on their own or with other advocates. Please refer to the event program for information on dining options.
Capitol Hill Day
Wednesday, April 30
Childcare:
Childcare will not be provided on Wednesday, April 30, and children are expected to accompany parents or caregivers on Capitol Hill or have separate childcare arrangements.
| Time | All Attendees | Location |
|---|---|---|
| 6:00 – 8:00 AM | Breakfast buffet for all attendees, Sponsored by ABC-DS | Salons 1-4 |
| 7:45-8:00 AM | Busses depart to Capitol Hill The last bus will depart promptly at 8:00 AM. Attendees are encouraged to arrive at the bus loading area early to ensure they do not miss the bus. For those who do not wish to take the bus, please refer to the “Transportation Information” section of the program. | Hotel Main Entrance |
| 8:45 AM | Group photo on Capitol Hill The group photo will be taken promptly at 9:00 AM. Attendees with meetings that conflict with the group photo are encouraged to take photos at a time that works best with their unique schedule. | Meet at the House side of the Capitol facing the Supreme Court and Library of Congress. Please see online resources for a map. |
| 9:00 AM – 5:00 PM | Hill meetings | Meetings will take place in Congressional office buildings. Please refer to your personalized agenda for exact times and locations. |
| 5:00 – 6:30 PM | Congressional Reception | Capitol Hill |
Conference Tracks
Pre-Conference Bootcamp
Elevate your advocacy skills with our expanded 2025 conference offering – pre-conference bootcamp!
In response to your feedback, we're reintroducing an exclusive pre-conference day on Monday, April 28. This bonus session offers in-depth exploration of four crucial areas:
- Employment & Policy
- Health and Wellness & Policy
- State Policy Bootcamp
- Education & Policy
Each course will highlight how NDSS resources connect local, state, and federal policies to drive meaningful change. Don't miss this opportunity to deepen your knowledge and amplify your impact in the Down syndrome community!
Pre-conference bootcamp tickets are available at an additional add-on expense for attendees without disabilities. Attendees with Down syndrome or other disabilities can attend the pre-conference bootcamp sessions for FREE. Children ages 6 – 11 are encouraged to attend the childcare sessions provided at this time for an additional fee.
General Conference Track
The general conference track is recommended for individuals with Down syndrome ages 18+ who have previously advocacy experience and all parents, caregivers, siblings ages 18+, and all other attendees.
The general track includes:
- Our pre-conference webinar and materials
- An engaging keynote speaker and policy and advocacy general sessions on Tuesday, April 29
- Breakfast on Tuesday, April 29
- The Champions of Change luncheon on Tuesday, April 29
- Our evening reception on Tuesday, April 29, including one drink ticket
- Breakfast on Wednesday, April 30
- Transportation to Capitol Hill on Wednesday, April 30
- Pre-scheduled meetings on Capitol Hill on Wednesday, April 30
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.
Modified Track
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:
- Our pre-conference webinar and materials
- An engaging keynote speaker and policy and advocacy sessions on Tuesday, April 29 designed to support self-advocates and teens in developing their advocacy skills and crafting their message to Capitol Hill
- Breakfast on Tuesday, April 29
- The Champions of Change Luncheon on Tuesday, April 29
- Our evening reception on Tuesday, April 29, including one drink ticket
- Breakfast on Wednesday, April 30
- Transportation to Capitol Hill on Wednesday, April 30
- Pre-scheduled meetings on Capitol Hill on Wednesday, April 30
Childcare
Childcare will be available for children ages 6 – 11 on Monday, April 28th for the pre-conference bootcamp from 1 pm to 5 pm and on Tuesday, April 29 from 8:30 am to 3 pm. Childcare will not be provided on Wednesday, April 30, and children are expected to accompany parents or caregivers on Capitol Hill or have separate childcare arrangements. The 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 April 28 and 29 are sold separately.
Childcare tickets for April 28 (the pre-conference bootcamp) include:
- A half day of engaging activities on Monday, April 28
- A snack
Childcare tickets for April 29 (the conference training day) include:
- A full day of engaging activities on Tuesday, April 29
- Breakfast, lunch, and a snack
- Access to the evening reception on Tuesday, April 29
- Breakfast on Wednesday, April 30
- Transportation to Capitol Hill on Wednesday, April 30
- Pre-scheduled meetings on Capitol Hill on Wednesday, April 30
Additional Information
Legislative Priorities
Click here to learn about the legislative priorities we will be advocating on at the 2025 Down Syndrome Advocacy Conference!
Scholarships
NDSS is proud to offer a limited number of scholarships each year to support passionate advocates who require financial assistance to attend the conference. The scholarship application period for the 2025 conference has now closed. These scholarships are crucial in ensuring representation and fostering inclusive dialogue at our event.
We recommend exploring potential support or group discounts through your local Down syndrome organization. To connect with your nearest group, please click here. For more details or questions about future scholarship opportunities, please email policy@ndss.org.
Champions of Change
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 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
Exhibitor Opportunities
NDSS offers the opportunity for advocacy organizations, service providers, self-advocate-owned businesses, and others to exhibit on Monday, April 28 and Tuesday, April 29. For more information on exhibitor opportunities, please contact policy@ndss.org.
Thank you to our Sponsors and Exhibitors!
Champions of Change Sponsor
Breakfast Sponsor
Coffee Break Sponsor
Self-Advocate Sponsor & Exhibitor
In-Kind Sponsors
Premium Exhibitors
Exhibitors
