“She was an anomaly for the scleroderma world,” says Olivia Muñoz Mulkin of her mother, Maria “Missy” Cavazos. This Mother’s Day, as we celebrate the strength and love of mothers everywhere, we remember Missy, a remarkable woman and mother who defied the odds in her battle against scleroderma. “Her prognosis was only 4-5 years, but with her grit and determination, she survived with scleroderma for 24 years!” In 2000, Olivia and her sister Mariana were only 10 and 17 years old, respectively, when their mother was diagnosed with scleroderma. When Missy first started developing symptoms, her cond ..read more

Collaboration is critical to making research progress. That’s why the SRF co-sponsored a recent workshop with the National Institutes of Health (NIH) & other nonprofit organizations to discuss scientific advances in immunotherapies and cellular therapies in systemic sclerosis (SSc) and chronic graft-versus-host disease (cGVHD). Held on April 30 & May 1 at the NIH in Bethesda, Maryland, this workshop brought together more than 100 leaders and investigators in the fields of SSc and cGVHD for a day and a ha ..read more

The SRF’s recent Annual Science Workshop brought together researchers from across the country for innovative collaboration. Held this year on April 12 & 13, the workshop serves as the cornerstone of our research program. Over two days, participating Scientific Advisors, funded investigators, new applicants, and expert speakers shared research updates, engaged in rigorous discussion, and brainstormed new approaches. Following the workshop, Scientific Advisory Board members help evaluate the progress and potential of each project. By lending their expertise and insights, we can make impac ..read more

Registration is now open for “Collaborating for a Cure,” the SRF Patient Forum on June 3rd, a free virtual event for those affected by scleroderma. Also, join us in celebrating the dedication of the Cure Crew volunteers this National Volunteer Month, learn about how to donate easily with our new digital wallet payment options, and stay informed with the latest scleroderma research news and SRF highlights. Read Now The post SRF eNews: April 2024 Edition appeared first on Scleroderma Research Foundation ..read more

Register now for “Collaborating for a Cure,” the SRF Patient Forum, on June 3rd! You’re invited to a FREE virtual forum for people living with #scleroderma and those who care about them. On June 3rd, we will host a half-day forum featuring educational sessions by leading clinicians and scientists, followed by live Q&As. Topics include symptom management, research news, and your role in finding a cure for scleroderma. “Collaborating for a Cure” is an online, virtual event that anyone can attend for free by registering in advance. Kick-off #SclerodermaAwaren ..read more

Do you have tips and tricks for living with scleroderma? Find out how you can share your innovative life hacks for managing scleroderma by submitting a short video to be featured in our upcoming Patient Forum, “Collaborating for a Cure.” Also in this issue of eNews, explore Dr. Howard Chang’s Fox News feature on women’s predisposition to autoimmune diseases, Carl Mayer’s touching tribute to Bob Saget raising funds for research, and the presentation of the CONQUEST platform trial at the Systemic Sclerosis World Congress Meeting. Read Now The post SRF eNews: March 2024 Edition appeared f ..read more

In this month’s eNews, read about Dr. Howard Chang’s groundbreaking new study exploring why women are more likely to develop autoimmune conditions. We’re also featuring patient stories, including Dee’s experiences with PAH and Aneila’s journey handling her Reynaud’s diagnosis. And save the date — this year’s Patient Forum will be held on June 3, 2024. Stay tuned for more details on registration and speaker panels. Read Now The post SRF eNews: February 2024 Edition appeared first on Scleroderma Research Foundation ..read more

Here at the Scleroderma Research Foundation, research is at the center of all we do to find a cure—and that’s only possible because of the dedicated support of our community. Your investments make a remarkable impact on our research efforts, and we’re thrilled to share updates on the results of these meaningful partnerships: Exciting news: the CONQUEST Platform Clinical Trial has officially launched! The first site can begin enrolling patients this month, and in the coming year, we expect to have 130 participating centers in 22 counties enrolling patients in the trial. CONQUEST’s unique desig ..read more

SRF-funded researcher Dr. Howard Chang shares a breakthrough discovery he & his collaborators made, shedding light on why women are more likely than men to develop autoimmune diseases like #scleroderma, in this recent piece from Fox News. The Scleroderma Research Foundation (SRF) is the primary sponsor of this study. It’s a major milestone in our near decade-long concentrated effort to understand female-biased autoimmunity, a commitment spearheaded by Dr. Chang and his team. Women account for nearly 80% of all cases of autoimmune disease—a category that includes scleroderma, lupus, rh ..read more

Nearly 90% of those with scleroderma have Raynaud’s symptoms. This is why Raynaud’s can be a “red flag” that helps lead to diagnosis and treatment of scleroderma. And for Aneila, dx 2021, this was exactly the case. “Raynaud’s was actually my first symptom,” she shared with us. After that, she started experiencing skin discoloration, extreme fatigue, and major pain in her muscles and knees. Unfortunately, getting to a scleroderma diagnosis wasn’t straightforward. “I visited 3 different doctors who dismissed me with fatty liver and sent me away,” she says. “I was only getting worse, and my ..read more