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Scleroderma Research Fndn.

@srfcure

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America's leading nonprofit investor in medical research aimed at finding better treatments and a cure for scleroderma. www.srfcure.org

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We had a BLAST at the Scleroderma Research Foundation’s (SRF) @srfcure Cool Comedy-Hot Cuisine on Tuesday where they raised more than $1M to fund research and find a cure for scleroderma! It was a memorable night filled with beautiful tributes to Bob Saget and his undeniable dedication and passion, supporting scleroderma awareness and funds for scleroderma research with the help of his Full House cast mates and the many comedians that loved him and showed up for the cause. SRF’s Chairman, Luke Evnin, PhD, gave an inspiring speech full of hope, sharing some of the amazing strides they’re making in research and getting closer to a cure, while Howie Mandel Honored John Stamos with the Bob Saget Legacy Award. The comedians ended the night with full bellies of hearty laughs, giving of their time for the cause. WELL DONE SRF!!!!! Until we meet again..... by @srfcure

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Thank you @srfcure & @kellyrizzo for allowing me to help raise money for such a wonderful cause while celebrating the legacy of Bob Saget. Also John Mayer likes my comedy and told me that my body is a wonderland. by @srfcure

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"He is a DIY guy with a degree in electric engineering, so there really wasn't anything he couldn't do! He was in the peak of health and felt incredible," says Naomi W. of her husband Stephen (dx 2025). "Then, at the beginning of last year, something changed."

"His hands became extremely painful and sensitive to the cold," she recalls. "His right wrist started aching terribly, and he had neuropathy in his lower legs." When a high ANA test indicated an autoimmune disease, the couple searched for a rheumatologist, but none practiced nearby. A last-minute appointment in Salt Lake City led to answers in early March: Stephen had rapid-onset diffuse systemic scleroderma.

"If we had not been so diligent at educating ourselves, learning the phrases, and asking questions, I fear Stephen would not have recovered like he has," Naomi shares. "With scleroderma, it is all so connected, and we had to make sure each doctor understood the whole picture."

"It became very apparent that the doctors were not experienced in handling such an extreme case of scleroderma," she says. Over the following months, Stephen faced pneumonia, interstitial lung disease (ILD), and heart complications, spending weeks in the hospital and in skilled nursing.

In January 2026, Stephen's treatment finally began to take hold. "His lungs have gotten better. He no longer needs oxygen unless he is exerting himself," she shares. "The Raynaud's has still been a constant struggle, but he has been slowly building back his strength."

"He decided that he would not let scleroderma take him, and he has fought as hard as he possibly could," says Naomi. "Lately, he has been back at our home in rural Utah, climbing up into his tractor to get things done, and feeding the horses and goats."

These days, the couple are ardent supporters of research. "The research is so incredibly important, because the doctors we came across knew so little," Naomi says.

We are so grateful to both Naomi and Stephen for sharing their story. Discover how the Scleroderma Research Foundation is advancing research to improve the lives of people living with scleroderma at the link in the first comment below. by @srfcure

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Help advance scleroderma research through the CONQUER Registry 🔬

People living with scleroderma are essential partners in research. By participating in the CONQUER Registry, you can contribute valuable information that helps researchers better understand how systemic sclerosis develops and changes over time.

CONQUER, the COllaborative National QUality and Efficacy Registry, is a nationwide patient registry and biosample repository created by the Scleroderma Research Foundation in 2018.

The registry collects long-term information about the health, disease complications, treatments, and outcomes of people living with systemic sclerosis.

By studying information from many patients over time, researchers can identify patterns that may help improve care and contribute to the development of more effective, personalized treatments. As of July 2026, more than 1,400 patients have enrolled in CONQUER.

Learn more about how you can be part of CONQUER at the link in the first comment below. by @srfcure

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Does scleroderma affect a transplanted lung? 🫁

After a lung transplant, the patient's scleroderma will not directly affect the new lungs. But that does not mean there are no concerns.

Scleroderma-associated lung disease develops through a slow process in which the patient's immune system attacks healthy, native tissue. Donor lungs carry none of this history and the patient's autoantibodies will not interact with it in the same way. So, the patient's scleroderma does not directly damage the new lung tissue.

That said, the donor lungs are not entirely insulated from the surrounding disease environment. They sit within a body that still has scleroderma-related blood vessel changes, circulating autoantibodies, and other systemic effects. Symptoms from other organs, such as reflux from the GI tract, can still cause damage to the lungs.

So, while direct recurrence of the original disease process in the donor lung is unlikely, the new lungs remain vulnerable to injury from the continued, systemic effects of scleroderma.

Learn more about scleroderma and related complications on our website, linked at the first comment below. Informational graphic from the Scleroderma Research Foundation with the text: "How scleroderma can impact a transplanted lung." by @srfcure

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You won’t want to miss this year’s Cool Comedy • Hot Cuisine (CCHC), but don’t just take our word for it—hear it from our host, Roastmaster General Jeff Ross! 🎤

Join us in Los Angeles on October 13 for an unforgettable night of world-class comedy, incredible food, and meaningful connection, all to raise critical funds for scleroderma research. This year, TV legend John Stamos will receive the Bob Saget Legacy Award, joined by an all-star lineup of performers.

Tickets are going fast, so be sure to grab yours now. Help us end scleroderma at this year’s CCHC: purchase tickets, sponsorships, or make a donation at our link in bio or at srfcure.org/cchc

Event Co-Chairs: Susan Feniger, Regina Hall, Caroline Hirsch, John Mayer, Kelly Rizzo
Presenting Sponsors: Max, Samantha, Montana, and Mark Scher; Wright & Evnin Family Foundation by @srfcure

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Join the SRF Patient Connections Program for the chance to offer your perspective directly to the researchers working on future treatments. 🌐

We're seeking volunteers living with scleroderma who may be willing to tell their stories to industry partners and other research investigators looking for input from this community.

Program members may receive invitations to participate in patient advisory groups, focus groups, surveys, interviews, and other activities. Your insights can help shape treatments that improve the lives of everyone affected by this disease.

Find more information and sign up now at our link in bio or in the first comment below. by @srfcure

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“I looked down at my fingers, and they almost looked black,” remembers Jane J. (dx 2008). “I couldn’t lift anything without pain in my wrists.” Test after test came back with nothing, until a hand surgeon treating her for carpal tunnel decided to refer her to a rheumatologist.

“Eventually, I was diagnosed with systemic sclerosis. My doctor told me, ‘Scleroderma got aggressive with you, so we’re going to get aggressive with it,’” she recalls. “It’s so important to build a healthcare team with physicians who want to help you fight.”

Jane decided that she didn’t want to navigate scleroderma alone. “Finding patient support is so important,” she says. “It was at a conference where I was first surrounded by people who understood what I was experiencing. It was so helpful for me to find community with others who have this disease.”

That sense of community became a source of strength as she faced the harder days ahead. “We all are so much stronger than we know. In the end you have a choice: you can laugh, or you can cry,” Jane says. “I try to choose to laugh as often as I can.”

“If you’re at the beginning of your journey, do not give up. Even if you’re further along your journey, do not give up,” she advises. “Take good notes and keep good records. Be your own advocate. And if you’re not up to that task, then find a family member or friend who is on your behalf.”

These days, Jane is proud to #SayScleroderma. “For years, I have co-spearheaded local walk/runs to raise awareness and funding for research,” she describes. “This new line of SRF merchandise has given me another way to spread the word.”

Throughout it all, Jane has remained a devoted supporter of research. “Research in the pursuit of finding a cure is the path forward. While there isn’t a cure for it yet, there are plenty of things that can be done,” she says. “It takes funding in this world to support the bright minds who will ultimately figure this out.”

We’re grateful to Jane for sharing her story. You can join her in wearing your support on your sleeve. Score some gear at the SRF Merch Shop, linked in the first comment below. by @srfcure

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