The Scleroderma Research Foundation Monthly eNewsletter

eNews: April Edition

The Stamos Family is Fundraising for a Cure

In honor of Bob Saget's dedication to raising awareness and funds for the Scleroderma Research Foundation, Caitlin McHugh Stamos and John Stamos created the "BeCause We Care" blue bracelets line in partnership with My Saint My Hero. Here, they're modeled by Kierra, who was diagnosed with scleroderma in 2020.

They will donate 100% of the Stamos Family proceeds to the SRF, and we could not be more grateful that they chose to help end scleroderma as a way to remember their dear friend Bob.

Registration Opens Soon for the SRF Patient Forum

Coming soon to your inbox—an invitation to join us on June 1st for the SRF Patient Forum, a free, virtual half-day event for people with scleroderma and those who care about them. Registration opens next week!

Dr. Kathryn Torok (Pittsburgh Children's Hospital), Dr. Elana Bernstein (Columbia University Irving Medical Center) and Dr. Ami Shah (Johns Hopkins School of Medicine) are just three of the confirmed speakers who will present educational sessions and be available to answer your questions during live Q&As. Stay tuned for more speaker announcements and watch for registration information soon.

New Center Joins the CONQUER Consortium

Led by Dr. Elizabeth Volkmann, UCLA's Scleroderma Program is now a part of the CONQUER Consortium, joining some of the largest scleroderma centers in the United States who are participating in this highly collaborative effort.

Launched by the SRF in 2018, the CONQUER Registry is a nationwide patient database and biosample repository that is enabling researchers and clinicians to learn as much as possible about all forms of scleroderma. Patient participation in CONQUER helps accelerate advances in clinical care and support the development of new therapies​. 

Funding Research to Understand Fibrosis

To better understand fibrosis in those with scleroderma, the SRF funds the work of Dr. Franck Barrat, Senior Scientist at the Hospital for Special Surgery. While plasmacytoid dendritic cells (pDCs) are associated with normal wound healing, Dr. Barrat’s group and others have shown that pDCs behave differently in scleroderma skin where they are present in increased numbers and they contribute to persistent skin fibrosis.

Currently, Dr. Barrat's group is investigating different aspects of pDCs, including whether modulating the pDC response can also turn off fibroblast activation. This work could help lead to new therapeutic insights.

Falguni's Experience with Scleroderma Renal Crisis

Approximately 15% of people living with scleroderma are affected by kidney problems. As one of those affected, Falguni (dx 2020) shares how her experience with scleroderma renal crisis motivated her to proactively learn about scleroderma and its complications.

Research is at the center of all we do to find a cure.

Ways to Support Research

Employer Matching / Planned Giving