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.