Join us March 2 - March 4 , 2025
If you registered for the event and haven't received access information, please send us an email at [email protected].
Join advocates from across the country as we come together as one for the Spina Bifida Association's largest annual advocacy event - Teal on the Hill.
If you are interested in becoming a sponsor for this event, please contact Stephanie Myers, Manager of Corporate and Individual Giving, at [email protected].
Join advocates from across the country as we come together as one for the Spina Bifida Association's largest annual advocacy event - Teal on the Hill.
- Connect with others in the Spina Bifida Community.
- Advocate for access and care.
- Educate decision-makers on topics that affect your day-to-day life.
- Learn about the legislative process and how your voice can make an impact locally and nationally.
- Share your voice and make your passions heard by speaking directly to House and Senate offices.
If you are interested in becoming a sponsor for this event, please contact Stephanie Myers, Manager of Corporate and Individual Giving, at [email protected].
Location
Virtual
Date & Time
March 2-3, 2025
Teal on the Hill virtual training
March 4, 2025
Virtual meetings with members of Congress.
Teal on the Hill virtual training
March 4, 2025
Virtual meetings with members of Congress.
Schedule
All times are in EST
Sunday, March 2
12:30 p.m. Welcome and Introductions
1:00 p.m. The National Spina Bifida Patient Registry (NSBPR): Past, Present, and FUTURE
Presented by Judy Thibadeau, RN, MN and David Joseph, MD
1:45 p.m. Break
2:00 p.m. Hill Meeting Logistics
We will celebrate some of our best advocates, learn exactly what to expect during your Hill meeting, and watch a live demonstration.
2:45 p.m. Break
3:00 p.m. Breakout Groups and Hill Meeting Prep
We will split up into our Hill meeting groups to prep for Tuesday. Each group will be facilitated by a group leader. You’ll review your schedule for the day and get your game plan together for how you’ll tackle your conversations.
4:45 p.m. Day 1 Wrap Up
5:00 p.m. Adjourn
Monday, March 3
12:00 p.m. Day 2 Opening and Awards
We will recognize a number of leaders in our movement, including this year’s recipients of the Tom Baroch Advocacy Award and the Young Adult Advocate of the Year Award.
12:30 p.m. Break
12:45 p.m. My Journey as a Self-Advocate
Listen in as Amie Richards, an adult with Spina Bifida, talk about her journey as a self-advocate.
1:15 p.m. Breakout Groups and Hill Meeting Prep
We will split up into our Hill meeting groups to prep for Tuesday. Each group will be facilitated by a group leader. You’ll review your schedule for the day and get your game plan together for how you’ll tackle your conversations.
2:15 p.m. Break
2:30 p.m. What Does Advocacy Look Like?
Advocacy can look different in all aspects of your life. It is not limited to legislative advocacy but also how you advocate in your own personal life. In this session you’ll hear from members of the Spina Bifida Community as they talk about topics from advocating for yourself in a hospital setting to advocating for yourself on a college campus.
3:15 p.m. Break
3:30 p.m. Today’s political landscape and the Strength of Coalitions
The strength of coalitions is extremely important. Listen in as Michael Barnett from the Powers team who directs the ITEM (Independence Through Enhancement of Medicare and Medicaid) Coalition talks about what he sees for this Congress and beyond.
4:15 p.m. Day 2 Wrap Up
4:30 p.m. Adjourn
Tuesday, March 4
Virtual meetings with members of Congress scheduled throughout the day*
This is the day! You will receive Zoom links and calendar invitations for the meetings you are invited to attend with Members of Congress or their staff representatives. We strongly encourage you to attend all the meetings you asked to join if at all possible. There is power in numbers.
6:00 p.m. End-of-Day Rally and Celebration
Let’s all reconvene online to share stories, discuss any follow up actions that came out of our meetings, talk about what we need to do next, and celebrate the day!
*To attend meetings with your members of the House and Senate (virtually), registrations must have been received by February 7, 2025.
12:30 p.m. Welcome and Introductions
1:00 p.m. The National Spina Bifida Patient Registry (NSBPR): Past, Present, and FUTURE
Presented by Judy Thibadeau, RN, MN and David Joseph, MD
1:45 p.m. Break
2:00 p.m. Hill Meeting Logistics
We will celebrate some of our best advocates, learn exactly what to expect during your Hill meeting, and watch a live demonstration.
2:45 p.m. Break
3:00 p.m. Breakout Groups and Hill Meeting Prep
We will split up into our Hill meeting groups to prep for Tuesday. Each group will be facilitated by a group leader. You’ll review your schedule for the day and get your game plan together for how you’ll tackle your conversations.
4:45 p.m. Day 1 Wrap Up
5:00 p.m. Adjourn
Monday, March 3
12:00 p.m. Day 2 Opening and Awards
We will recognize a number of leaders in our movement, including this year’s recipients of the Tom Baroch Advocacy Award and the Young Adult Advocate of the Year Award.
12:30 p.m. Break
12:45 p.m. My Journey as a Self-Advocate
Listen in as Amie Richards, an adult with Spina Bifida, talk about her journey as a self-advocate.
1:15 p.m. Breakout Groups and Hill Meeting Prep
We will split up into our Hill meeting groups to prep for Tuesday. Each group will be facilitated by a group leader. You’ll review your schedule for the day and get your game plan together for how you’ll tackle your conversations.
2:15 p.m. Break
2:30 p.m. What Does Advocacy Look Like?
Advocacy can look different in all aspects of your life. It is not limited to legislative advocacy but also how you advocate in your own personal life. In this session you’ll hear from members of the Spina Bifida Community as they talk about topics from advocating for yourself in a hospital setting to advocating for yourself on a college campus.
3:15 p.m. Break
3:30 p.m. Today’s political landscape and the Strength of Coalitions
The strength of coalitions is extremely important. Listen in as Michael Barnett from the Powers team who directs the ITEM (Independence Through Enhancement of Medicare and Medicaid) Coalition talks about what he sees for this Congress and beyond.
4:15 p.m. Day 2 Wrap Up
4:30 p.m. Adjourn
Tuesday, March 4
Virtual meetings with members of Congress scheduled throughout the day*
This is the day! You will receive Zoom links and calendar invitations for the meetings you are invited to attend with Members of Congress or their staff representatives. We strongly encourage you to attend all the meetings you asked to join if at all possible. There is power in numbers.
6:00 p.m. End-of-Day Rally and Celebration
Let’s all reconvene online to share stories, discuss any follow up actions that came out of our meetings, talk about what we need to do next, and celebrate the day!
*To attend meetings with your members of the House and Senate (virtually), registrations must have been received by February 7, 2025.
Sponsor Exhibit Hall
TEAL SPONSORS
EXHIBITORS
If you would like more information on partnering with SBA and sponsorship opportunities please contact: Stephanie Myers, Manager of Corporate and Individual Giving [email protected] or 847-269-1186.
We're Asking Members of Congress
Support a $11 million dollar budget for the National Spina Bifida Program (NSBP), the only place in the federal government exclusively dedicated to studying Spina Bifida.
The Program houses the National Spina Bifida Patient Registry, which collects data to improve the quality of care for people living with Spina Bifida. Our request equates to just $21 per person (based on the 166,000 affected individuals in the U.S.)
Preserve the integrity of the National Spina Bifida Patient Registry.
Proposed changes in the next phase of the CDC’s National Spina Bifida Patient Registry (NSBPR) and the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE) would reduce the number of funded sites, thereby jeopardizing the future of these critical studies.
We need your help to ensure no clinics that are currently in the Patient Registry are removed!
The Program houses the National Spina Bifida Patient Registry, which collects data to improve the quality of care for people living with Spina Bifida. Our request equates to just $21 per person (based on the 166,000 affected individuals in the U.S.)
Preserve the integrity of the National Spina Bifida Patient Registry.
Proposed changes in the next phase of the CDC’s National Spina Bifida Patient Registry (NSBPR) and the Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE) would reduce the number of funded sites, thereby jeopardizing the future of these critical studies.
We need your help to ensure no clinics that are currently in the Patient Registry are removed!
Take Action Now
More information coming soon!
Event Pricing & Registration
If you have questions regarding registration please contact
us at [email protected].
us at [email protected].
Standard Ticket
$50
This is our per-person cost of hosting this virtual event. If you are in a position to cover the cost of your ticket and another or if you're unable to pay the Standard Ticket price, see additional ticket options.
Community Champion Ticket
$100
Covers your cost plus a portion of another who cannot pay the full cost to attend this virtual event.
Community-Supported Ticket
$25
If you are unable to pay the standard ticket price for any reason, this is your no questions asked option to join the movement at a reduced rate, thanks to the support of a Community Champion.
To attend meetings with your members of the House and Senate (virtually) on March 4, registrations must be received by February 7, 2025.