Scleroderma advocates from across the country spent Wednesday and Thursday speaking with legislative offices about the critical legislative priorities of the scleroderma community.
The 2026 Spring Virtual Hill Days provided members of our community an opportunity to speak with legislative staffers and let them know how important pieces of legislation can make a big impact on the lives of people living with scleroderma.
“We are so grateful for our advocates who take time out of their day, not just for legislative meetings, but for training and preparation leading up to the meetings,” Ashley Pruett, Vice President for Community Engagement said. “Each advocate takes time to share a very personal story, and I can tell you it makes a huge impact with legislative staffers they meet with.”
This Spring, advocates made a series of legislative asks focused on supporting scleroderma research and making critical improvements to healthcare access and affordability.
2026 Legislative Priorities
- Ensuring scleroderma continues to be included in the Peer Reviewed Medical Research Program (PRMRP) for FY27
- Ensuring robust funding for the NIH and CDC
- Co-sponsor and advancement of the Safe Step Act
- Co-sponsor and advancement of the HELP Copays Act
- Co-sponsor and advancement of the Clinical Trials Modernization Act
- Co-sponsor and advancement of the PBMM Reform Act
For more details about these legislative priorities visit the Advocacy section of our website.
Spring 2026 Virtual Hill Days
In total, our advocates held more than 20 different meetings. These meetings are very important as the legislators are in the middle of the budget planning cycle for FY27 right now.
Many of the advocates who advocated this week, also took part in Virtual Hill Days in the Fall. However, there were a few new faces who made the most of their very first chance to advocate for the scleroderma community.
“Raising awareness and advocating for patients like myself has opened new chapter in my life,” Ke’aka Stokes, a first-time advocate, said. “It’s easy to get caught up in the mundane, day-to-day Scleroderma life and feel burned out. Virtual Hill days, and advocacy, renew that spark. I’m excited to see where advocacy takes me and the scleroderma crew!”
More Work to Do
This is just the beginning of the Foundation’s advocacy efforts this year. In July, Foundation staff and advocates will lead a breakout session about advocacy during the National Scleroderma Conference in Baltimore. Later this year, the Foundation also plans to host another Virtual Hill Days event.
“We’re building a regular schedule of Virtual Hill Day opportunities,” Pruett said. “It’s important to remember, though, advocacy is a year-round project.”
You don’t have to attend a real-time meeting, like for Virtual Hill Days, to make your voice heard. The Foundation regularly shares action alerts throughout the year. Action alerts are used when we need members of our community to reach out to their legislators by phone or email to encourage them to take certain actions.
To keep up to date on all the Foundation’s advocacy efforts, please visit our Advocacy webpage. You can also email our team with questions or to talk about how you can get involved.