A look back at a year of growth with Vice President of Community Engagement Ashley Pruett
The National Scleroderma Foundation spent much of 2025 highlighting the strength in our community. It is through advocacy that our community puts that strength into action. Ensuring legislators and lawmakers know about scleroderma, speak about scleroderma, and support bills that include scleroderma, is a top priority for the National Scleroderma Foundation. The last nine months have been so unpredictable in Washington, DC, and the Foundation has focused our priorities and our message to keep scleroderma in the conversation on both sides of the aisle.
The Foundation has provided key training, helped arrange meetings with legislative staff, and provided toolkits and other resources to empower scleroderma advocates. However, it is the strong voices from our community that helped ensure critical research is funded and legislative progress continues to be made on bills that will improve the lives of people affected by scleroderma.
The Foundation’s Key Advocacy Objectives:
- Stay current and engaged on relevant legislative and public policy issues participating in coalition advocacy activities, and attend events on Capitol Hill.
- Ensure scleroderma continues to be included in the Peer Reviewed Medical Research Program for FY26, and that full funding is restored to the PRMRP during the FY26 budget appropriations process.
- Expand the scleroderma research portfolio at the National Institutes of Health (NIH) and increase educational and awareness opportunities at the Centers for Disease Control and Prevention.
- Cultivate a national network of grassroots advocates capable of effectively engaging their elected officials to advance a legislative and public policy agenda.
- Lead efforts to improve patient access to quality, affordable healthcare, and innovative treatments.
We have spent much of 2025 enhancing our advocacy infrastructure. We have updated our Advocacy pages on the website, developed new legislative advocacy guides, and recruited a network of advocates across the country who are eager to make their voices heard.
In early Spring, these new efforts were crucial in helping secure scleroderma’s continued inclusion in the PRMRP. We hosted a special advocacy #TealTalk to clarify priorities and address calls to action. The Foundation shared action alerts and encouraged our advocates to talk to their legislators, successfully ensuring scleroderma stayed on the list of eligible conditions.
After this early success, we immediately turned our attention to FY26 funding. Four advocates from the National Scleroderma Foundation joined the Coalition for Skin Diseases for a visit to Capitol Hill in May. Evamarie Cole, Kheesa Jones, Monica Ramirez, and Dr. Joseph Washington joined a day-long call for robust funding for medical research, lower prescription costs for people with chronic diseases, and policy improvements that will ensure patients have more efficient access to new and more effective treatments.
We carried that message and momentum into Scleroderma Awareness Month, in which our community shared their Stories of Strength to help more than 30 locations shine teal. We also hosted a Virtual Hill Days campaign, helping more than 25 scleroderma advocates hold more than 30 legislative meetings to continue share our stories and our priorities.
“I was especially touched when Mr. Summer reminded me of a previous meeting we had in May when I attended Coalition of Skin Diseases Hill Day. His recognition made the moment deeply meaningful and reinforced the importance of continued advocacy. I look forward to maintaining communication with legislators and continuing to raise awareness and drive meaningful policy changes for people affected by scleroderma.”
– Monica Ramirez, Advocate, Miami, FL
As we head into Fall, we are building a strong foundation for our work in 2026. At the National Scleroderma Conference, in July, Evamarie Cole and Rod Douglas joined the Foundation’s legislative consultant, Josh Fein, for a panel discussion about becoming a scleroderma advocate. We had wonderful attendance at the session, and several folks followed up with us after the session to become advocates.
One lesson we have learned is that the most effective advocates carry on a continuous conversation with lawmakers. With that in mind, we have planned a second Virtual Hill Days event this October. Our advocates will have significant support from the Foundation after participating in a special training session before the legislative meetings.
We are excited about what the new year holds. In 2025, our network of advocates grew from 195 to nearly 300. And we want to continue to see that network grow; we need more scleroderma advocates and would love to talk to you about how that could be you. Whether you are living with scleroderma or care about someone with scleroderma, your stories and influence matter! Contact us at advocacy@scleroderma.org for next steps.
Ashley Pruett
Vice President, Community Engagement