NDSS Down Syndrome Advocacy Conference

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	State Policy Bootcamp	Salons 1-4
4:00- 4:15 PM	Break	Salons 1-4
4:15-5:00 PM	Education Policy	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 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.