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A TV Legend Takes the Stage: Honoring John Stamos at Cool Comedy • Hot Cuisine | |
Nearly 40 years ago, John Stamos and Bob Saget became TV family. Off-screen, that never changed.
At this year's Cool Comedy • Hot Cuisine (CCHC), John Stamos will receive the 2026 Bob Saget Legacy Award, celebrating the decades he has spent using his voice to champion the scleroderma community.
Since his introduction to the cause that was so close to Bob's heart, John has been committed to raising awareness and funds for scleroderma research. For decades, he’s continued to lend his signature charm and heartfelt dedication to Bob and the SRF by joining longtime friends and fellow supporters at CCHC to help bring scleroderma into the global spotlight.
It's an honor to give this award to someone who meant so much to Bob, and who continues to use his platform to shine a light on scleroderma.
| Pictured: John Stamos, Bob Saget, and other special guests at CCHC across the decades | | |
Every year, CCHC brings together world-class performances, an unforgettable dining experience, and meaningful connection—all to raise critical funds for scleroderma research.
Please join us:
Tuesday, October 13, 2026 | 6:30 PM PDT
The Beverly Wilshire, Los Angeles
Host
Jeff Ross
Event Co-Chairs
Susan Feniger, Regina Hall, Caroline Hirsch, John Mayer, Kelly Rizzo
| | P.S. There is a phenomenal lineup of talent in store this year. Stay tuned for the big reveal later this summer! | | | | |
New Survey: Your Experiences Can Help Shape Scleroderma Research | |
Designing better treatments requires more than laboratory discoveries—it also requires understanding how scleroderma affects people's daily lives. To help fill that gap, the Scleroderma Research Foundation has launched the Scleroderma Health & Resources Survey, a new initiative to systematically capture the lived experiences of people with the disease.
The survey collects information on symptoms, healthcare experiences, quality of life, caregiving needs, and the practical challenges of living with scleroderma. Together, these data points will provide researchers and clinical trial designers with valuable insights that can help inform future studies, improve outcome measures, and ensure that research better reflects what matters most to patients.
More than 500 people have already participated, creating an important new resource for the scleroderma research community.
If you have been diagnosed with any type of scleroderma, we encourage you to contribute to this effort by completing the approximately 15-minute survey.
| | Note: You can take this survey once per year, and your responses are completely anonymous. Thank you to all those who have already completed it. | | | | |
Register Now: Staying Ahead of ILD Webinar
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Join Toby Maher, MD (Keck School of Medicine of the University of Southern California) on Tuesday, September 15, 9 AM PST / 12 PM EST, for this year's FREE ILD-focused webinar, which will go beyond the basics of scleroderma-associated interstitial lung disease (SSc-ILD).
Held in recognition of national ILD Day, this session is designed for anyone, whether you live with this disease or you just want to understand more about this scleroderma complication. You'll also have the chance to get your questions answered at the post-session live Q&A moderated by Dr. Gregory Gordon, Chief Medical Officer for the SRF.
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University of Chicago Joins the CONQUER Registry | | |
The SRF's CONQUER Registry has reached an important milestone with the addition University of Chicago as its 20th participating site, further strengthening the nation's leading longitudinal scleroderma patient registry and biosample repository.
Since its launch by the SRF in 2018, CONQUER has enrolled more than 1,400 patients and become the gold standard scleroderma patient registry in the U.S.
Each new site expands the diversity and depth of clinical data and biospecimens available to investigators, accelerating discoveries about disease progression, treatment response, and the biological differences between patients.
Today, thanks to the support of patients and all participating centers, CONQUER is better positioned than ever to advance precision medicine and help identify which therapies work best for which patients—and why.
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The SRF Cure Crew: Turning Passion into Action | | |
"As someone who lives with scleroderma, I am part of SRF’s Cure Crew because my lived experience gives urgency and direction to the fight for a cure. I lend my voice so research stays grounded in real lives—not just data—because progress should reflect the people it is meant to save."
—Amy G. (dx 2001)
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For years, Amy has been part of the SRF Cure Crew—a grassroots network of volunteers around the world, united by a shared belief in the power of research to help people with scleroderma live longer, fuller lives. Together, Cure Crew members help the world SEE, SAY, and KNOW scleroderma.
Below, read about two more members putting that spirit into action.
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Manage Your Scleroderma with the SPIN-Self Program | | |
While the Scleroderma Research Foundation remains relentlessly focused on accelerating research toward better treatments and a cure, we are equally committed to helping people live better with the disease today. That’s why the SRF is proud to partner with the Scleroderma Patient-Centered Intervention Network (SPIN) to sponsor a new small-group program of SPIN-SELF, a self-management course designed specifically for people living with scleroderma.
Developed by SPIN in collaboration with researchers, healthcare professionals, and patient partners, SPIN-SELF was rigorously tested in a research study that found it to be effective in helping people living with the disease manage the physical, emotional, and day-to-day challenges of living with scleroderma.
This program is available at no cost to participants, ensuring that more people can access practical tools, expert guidance, and peer support wherever they are in their journey.
We are proud to support this innovative collaboration and provide more resources for the community while continuing to focus on driving meaningful research progress to end this disease. Click below to learn more about SPIN-SELF and see how you can get involved.
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When you include the SRF in your estate plans, your generosity will fund critical research to ensure future generations never hear the words: "You have scleroderma."
This Make-A-Will Month in August, create a lasting legacy by joining the Sharon Monsky Legacy Society. We offer a variety of free tools and resources to include the SRF in your estate plans to help advance the search for a cure.
A planned gift to the SRF—no matter the size—helps advance scleroderma research.
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Your Scleroderma Questions, Answered | | |
Each month, SRF Chief Medical Officer Dr. Gregory Gordon responds to questions from the scleroderma community.
Question: What is the difference between stem cell therapy and CAR T-cell therapy?
Answer: Stem cell therapy and CAR T-cell therapy are both being used to try to reset an overactive immune system in scleroderma, but they work in different ways. With stem cell therapy, medications are used to essentially wipe out the patient’s existing immune system, then rebuild it using stem cells that were collected beforehand.
CAR T-cell therapy takes a more targeted approach. Doctors remove some of the patient’s own T-cells (a type of immune cell) and re-engineer them in a lab to recognize and destroy a specific cell type that is believed to play a role in the tissue damage in scleroderma. The CAR T-cells are then re-infused into the patient, where they destroy those cells.
Read this full response to this question, along with his response to a question about CAR T-cell therapy, on our blog.
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Scleroderma Research in the News | | | | |
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