Scleroderma Research Foundation

08/24/2026

Ever wondered about the differences between CAR T-cell therapy and stem cell therapy for treating scleroderma? Check out the latest edition of Your Scleroderma Questions, Answered, a monthly Q&A column featuring responses from the SRF’s Chief Medical Officer, Dr. Gregory Gordon.

Q: What is the difference between stem cell therapy and CAR T-cell therapy?

A: 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. Think of it as a full reset; the treatment clears out the immune cells causing the disease along with everything else, then starts fresh. This is a more established option, backed by several clinical trials, and is available today. It’s an intensive treatment with real risks, so it’s typically reserved for more severe cases.

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. This approach was originally developed for cancer treatment and is now being explored for autoimmune diseases, but it’s still experimental and only available through clinical trials.

Read Dr. Gordon’s full answer, along with his response to another community-submitted question, and submit your own questions at the link in the first comment below.

08/21/2026

Don't miss our upcoming FREE live webinar on scleroderma-associated interstitial lung disease (SSc-ILD). 🫁

Registration for the webinar is now open:
📅 Tuesday, September 15
🕐 9AM PST/12PM EST
📍 Online

Hear from Toby Maher, MD, Professor of Clinical Medicine at the Keck School of Medicine of USC and CONQUEST Co-Principal Investigator, for a deeper dive into SSc-ILD.

After the session, bring your ILD questions to the live Q&A, moderated by SRF's Chief Medical Officer Dr. Gregory Gordon. Learn more about the event and secure your spot at the link in the first comment below.

08/20/2026

Check out the latest scleroderma research updates from the global community from this month 💡

While we didn't fund these projects, we're encouraged to see a continued focus on understanding scleroderma.

🔹 Trial to test scleroderma treatments at earliest stages of disease
🔹 Off-the-shelf cell therapy shows early promise as scleroderma treatment
🔹 HTS Engineered Glove Aids Assessment of Impaired Hand Dexterity in SSc
🔹 Wireless sensor may help track scleroderma skin changes at home
🔹 Off-label JAK inhibitors may stabilize lung function in systemic sclerosis

To read these articles, visit the full blog post linked in the first comment below.

08/18/2026

Cool Comedy • Hot Cuisine (CCHC) returns to the Beverly Wilshire in Los Angeles on Tuesday, October 13, for an evening of side-splitting comedy and world-class dining to raise critical funds for scleroderma research—and wait until you see who's taking the stage this year!🎙️ 🍽️

We're proud to share that this year's Bob Saget Legacy Award Honoree is someone who truly embodies Bob's determination to advance scleroderma research...the one and only John Stamos! This award recognizes those who, like John, have followed in our beloved SRF board member's footsteps to shine a spotlight on scleroderma and raise funds for a cure.

And there's more—the lineup is NOT to be missed:
✨ Jeff Ross (Event Host)
✨ Matt Friend
✨ Ron Funches
✨ Lisa Ann Walter
✨ Seth Green (Guest Co-Auctioneer)
✨ Other special guests to be announced

All are generously donating their time and talents to help end scleroderma. This star-studded event not only directly supports research but also draws media attention, putting scleroderma and the need for a cure in front of new audiences across the country.

With deep gratitude to our event co-chairs:
Susan Feniger, Regina Hall, Caroline Hirsch, John Mayer, Kelly Rizzo

Help us end scleroderma. Become a sponsor or make a donation—link in the comments below.

Presenting Sponsors:
Max, Samantha, Montana, and Mark Scher
Wright & Evnin Family Foundation

08/17/2026

Managing digestive health is key to living well—and eating well—with scleroderma. 🥑

While scleroderma is commonly associated with skin changes, it affects many other organs. The gastrointestinal (GI) tract is the second most frequently affected system.

These gastrointestinal complications in scleroderma can impact more than just physical function. They can interfere with comfort, limit food choices, and reduce quality of life. Research shows GI issues are linked to depression in people with scleroderma.

Nutrition and the GI tract are deeply connected. The GI tract is the body system responsible for processing food, absorbing nutrients, and eliminating waste. That’s why it’s important to consider diet and nutrition as a part of managing GI issues in scleroderma. Beyond GI, nutrition can play a role in other scleroderma complications.

Learn more about the role of nutrition in managing scleroderma on our website, linked in the first comment below.

08/15/2026

"Scleroderma and interstitial lung disease (ILD) changed nearly every part of her life," says Ross W. of his wife Lisa's diagnosis in 2014. "ILD is often an invisible disease until it becomes severe—someone may look fine on the outside while struggling with every breath."

With ILD Day approaching, we're spotlighting people living with scleroderma and ILD, and the families who stand beside them. ILD is a serious complication of scleroderma that causes scarring in the lungs and makes breathing increasingly difficult.

"Lisa's journey was long and frustrating," Ross explains. "What started as symptoms that didn't seem connected gradually became impossible to ignore. She experienced worsening fatigue, joint pain, and breathing difficulties."

"She then went through countless appointments before finally receiving a diagnosis of diffuse scleroderma with interstitial lung disease," he says. "When she finally learned what she was facing, it was overwhelming."

"The disease affected her lungs, digestive system, and overall strength," Ross describes. "There were days she needed high levels of oxygen and had very little energy. Most recently, her journey led to a double lung transplant. Even through the challenges of recovery, she continues to prove how strong she is, taking one step at a time."

"Watching someone you love struggle is incredibly difficult," he says. "Lisa has taught me more about strength, perseverance, and courage than anyone I've ever known."

"We wish more people knew how important early diagnosis and research are," says Ross. "Supporting research means earlier diagnoses, better treatments, and a future where fewer families endure what so many patients face today."

Thank you, Ross and Lisa, for being so open with their family's story and for helping raise awareness around SSc-ILD.

Want to learn more about ILD? Join Dr. Toby Maher (Professor of Clinical Medicine at the Keck School of Medicine of University of Southern California and CONQUEST Co-Principal Investigator) for a FREE in-depth webinar on September 15 at 9AM PST/12PM EST. Learn more and register at the link below.

08/13/2026

Did you know ILD is one of scleroderma's most serious complications? 🫁

On September 15 (9AM PST/ 12PM EST), join this FREE live webinar to learn about scleroderma-associated interstitial lung disease (SSc-ILD). This online event is all about this severe complication of SSc-ILD that occurs when inflammation and scarring damage the lung tissue, and it can seriously affect breathing.

Hear from Toby Maher, MD, Professor of Clinical Medicine at the Keck School of Medicine of the University of Southern California and CONQUEST Co-Principal Investigator. He will cover:

🔷 Ways that SSc-ILD progression is recognized
🔷 The signs people living with SSc-ILD and clinicians should watch for
🔷 How that recognition shapes treatment decisions

Plus: stick around after the presentation for a live Q&A, moderated by SRF's Chief Medical Officer Dr. Gregory Gordon. Bring your questions!

You won't want to miss this year's information-packed webinar, so be sure to secure your spot! Register and learn more about the event at the link in the first comment below.

08/11/2026

Check out this upcoming webinar from our friends at the Scleroderma Foundation of Greater Chicago! Learn more and register in the post below.

Let's get moving!
We're excited to welcome Dr. Stephanie Frade, joining us all the way from Australia, for an inspiring session on exercising with scleroderma. Whether you're just getting started or looking for new ways to stay active, you'll discover practical strategies to overcome common barriers, manage symptoms, and build confidence through movement.

Grab your spot here: https://us02web.zoom.us/meeting/register/XNTo_4hxQhuGn5ZtIPn0xQ

08/10/2026

The SRF's CONQUER Registry has reached an important milestone with the addition of 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.

Learn more about CONQUER in the link in the first comment below.

08/07/2026

How do doctors test for interstitial lung disease? With ILD Day just around the corner, we're looking back at this clip from last year's webinar, where Toby Maher, MD (Professor of Clinical Medicine at the Keck School of Medicine of University of Southern California and CONQUEST Co-Principal Investigator) breaks down the tests used to detect and monitor scleroderma-associated ILD (SSc-ILD).

Want to learn more? Join us on September 15 (9 AM PST / 12 PM EST) for our upcoming FREE webinar, "Staying Ahead of Scleroderma-ILD: Understanding Progression and Treatment Options". This session is designed for anyone, whether you live with this disease or you just want to understand more about this scleroderma complication.

At the webinar, Dr. Maher will be back to go beyond the basics of ILD—diving into SSc-ILD progression, what symptoms to watch for, and available treatment options for the condition. Plus: stick around after the presentation for a live Q&A, moderated by Dr. Greg Gordon, Chief Medical Officer at the Scleroderma Research Foundation.

Secure your spot at this year's event—register now at the link in the first comment below!