The Scleroderma Research Foundation Monthly eNewsletter | | Cool Comedy • Hot Cuisine Returns to New York This November! | | |
📅 Wednesday, November 12, 2025
🍸 Cocktails: 6:30 PM | Dinner: 7:30 PM
📍 The Edison Ballroom, New York City
In partnership with the New York Comedy Festival
| Featuring the incredible talents of: | Receiving the Bob Saget Legacy Award: | | Help us end scleroderma. Purchase your sponsorships and tickets today. | | |
Presenting Sponsors: Max, Samantha, Montana, and Mark Scher
In partnership with the New York Comedy Festival
Special thanks to Event Co-Chairs Susan Feniger, Regina Hall, Caroline Hirsch, and Kelly Rizzo for their leadership and dedication
| | Watch Now: ILD Webinar Recording on YouTube | |
Couldn’t join us live? The full recording of the recent interstitial lung disease (ILD)-focused webinar, "Scleroderma and the Lungs: A Spotlight on ILD" is now available for viewing on the SRF YouTube channel.
The webinar featured insights from Dr. Toby Maher, Professor of Clinical Medicine at the University of Southern California and Co-Principal Investigator of the CONQUEST clinical trial. In his presentation, he discussed the connection between scleroderma and ILD, including screening, diagnosis, and treatment options.
| | Explore Tools to Help Find Clinical Trials | |
Clinical trials can offer access to promising new treatments—but figuring out eligibility isn’t always easy. Factors like diagnosis, disease stage, age, and treatment history all play a role.
To help simplify the search, the SRF has partnered with Carebox to offer a free trial-matching tool. By completing a short health questionnaire, people living with scleroderma can be matched with open trials in their area that may be a good fit.
|
| |
Carrying Forward Sharon Monsky's Legacy | |
On October 23, we celebrate the birthday of Sharon Monsky, founder of the SRF. Though she knew a cure for scleroderma might not come in her lifetime, Sharon believed deeply in the power of research to drive progress and offer hope.
Her tireless leadership transformed the SRF into the nation’s leading nonprofit funder of scleroderma research—and her impact continues to shape our work today.
To honor Sharon's enduring commitment to ending this disease, consider joining the Sharon Monsky Legacy Society by making a planned gift to the SRF. Planned gifts offer a meaningful way to ensure scleroderma research continues in the future, until a cure can be found.
"My dear friend Sharon was always thinking about the future—she wanted the SRF to keep driving progress long after her," says SRF Board Member Susan Feniger. "Supporting that vision is a way we can honor her.”
|
| SRF Funded Study Identifies Pathways That Contribute to Fibrosis Formation | |
The SRF funds top investigators from across scientific disciplines, who apply their diverse expertise to improve our understanding and treatment of scleroderma.
Stanford researcher Dr. Michael Longaker studies how fibrosis (scarring) develops, with the goal of finding new treatment targets. His recent study uncovered how fibrosis forms in Crohn’s disease, identifying molecular pathways that could also lead to future antifibrotic therapies for scleroderma.
|
| Strengthening Research and Collaboration at ACR Convergence 2025 | |
From October 24–29, the SRF will join rheumatology leaders at the American College Rheumatology (ACR) Convergence 2025, held at McCormick Place Convention Center in Chicago. This annual meeting brings together clinicians, researchers, and healthcare providers from across the globe to explore cutting-edge science and emerging trends in rheumatology.
At the conference, SRF leadership will meet with scientists, clinicians, industry partners, and scleroderma advocates to explore new collaborations, as well as host meetings and trainings for CONQUER Registry Principal Investigators and Research Coordinators. Strengthening these vital connections helps drive research forward toward a cure.
|
| Don't Miss This Upcoming Online Event: "What's New in Scleroderma Research" | |
The SRF is joining the Scleroderma Patient-centered Intervention Network (SPIN) and international partners to present "What’s New in Scleroderma Research: An Online Event for Patients & Families.”
📅 Saturday, November 22
⏰ 4-5:30 PM ET / 1-2:30 PM PT
Hear about the latest scleroderma studies, take part in a brief study by rating each presentation, and join a live Q&A with researchers.
| | Join our Volunteer Community: The Cure Crew | | |
The SRF Cure Crew is a grassroots volunteer program that raises awareness about scleroderma and funds to support the SRF research.
Cure Crew members around the world are united by a shared belief in the power of research to help people with scleroderma live longer, fuller lives, and lead us closer to a cure.
| | Tiffani Shares Her Journey With Scleroderma | |
“Scleroderma research is important to me because our lives would be drastically different without the progress made thus far,” says Tiffani P. (dx at age 18).
“At first, it was a small symptom, acid reflex. It started to get progressively worse over months, to the point I was terrified to eat or drink anything,” she remembers. Later, Tiffani noticed Raynaud’s Phenomenon in her hands—“the first symptom that I really considered something was seriously wrong with my body.”
|
| Jordan Hosts Concert for Scleroderma Research | |
When Jordan C.’s sister was diagnosed with juvenile scleroderma at age 12, it ignited his family’s heartfelt commitment to finding a cure.
Channeling that passion into purpose, Jordan’s John Mayer tribute band recently organized a benefit concert in support of the SRF.
| | Scleroderma Research in the News | | Check out the latest research updates from the wider community from this month. While we didn't fund these projects, we're encouraged to see a continued focus on understanding scleroderma. | | In Case You Missed it: Recent SRF Highlights | | Research is at the center of all we do to find a cure. | | |
Funding for the SRF education program is provided in part by our industry partners:
Amgen, Avalyn Pharma, Boehringer Ingelheim, Bristol Myers Squibb, Johnson & Johnson and Merck.
| | Know someone who might be interested in this information? Forward this newsletter to them! You can also encourage your network to sign up for our emails too. | | | | |
