SAN FRANCISCO (May 9, 2022) – The Scleroderma Research Foundation (SRF) will host its inaugural Virtual Patient Forum, Collaborating for a Cure, on Wednesday, June 1, 2022, to kick off Scleroderma Awareness Month. Designed for those living with scleroderma and the people who care about them, the half-day patient forum will bring together leaders from the scientific and medical community so that participants can learn more about scleroderma and the latest research efforts to address this complex disease. The forum will feature educational sessions on symptom management, new developments in research, and information about the vital role patients play in finding a cure for this rare autoimmune disease. Participants will engage in live Q&A sessions with presenters, interactive activities to win prizes, and more. Collaborating for a Cure is free to attend and registration is required at https://srfcure.org/forum.
“Since our founding in 1987, patients have been essential to supporting the Scleroderma Research Foundation and contribute to the advancement of our research programs through direct engagement as study participants, serving as advocates to raise awareness about the disease, and helping to raise funds to support research investments,” says Joanne Gold, Executive Director of the Scleroderma Research Foundation. “As we head into Scleroderma Awareness Month, the virtual patient forum is a way for people living with scleroderma to learn more from leading researchers in the field, connect with a community of advocates, and further the opportunity for discovery to end this disease.”
“As someone living with scleroderma, I know how challenging it can feel when searching for answers,” adds Scleroderma Research Foundation Board Chairman Dr. Luke Evnin. “The SRF’s commitment to our patients includes a deep commitment to providing needed information. The new patient forum represents an evolution of our efforts and will be a key component of our broader work to communicate the research and medical advancements, including those driven by the SRF’s own funding.”
Following the patient forum and throughout Scleroderma Awareness Month, SRF will also hold its second annual #SayScleroderma campaign, which raises awareness about the complex disease by encouraging people to speak out. Lack of awareness causes delays in treatment and diagnosis, and #SayScleroderma will help more people learn what scleroderma is and does. The SRF will feature stories from community members on social media throughout June, along with various ways those affected by scleroderma can make a difference by using their voice and influence.
Scleroderma, often misdiagnosed, is a rare, and often life-threatening autoimmune disease that can cause fibrosis in the skin and other vital organs. In the most serious cases, complications can result in damage to the heart, lungs, and digestive system. The SRF funds and facilitates the most promising, highest quality research aimed at improved therapies and, ultimately, a cure for scleroderma.
Presenters at Collaborating for a Cure include Shervin Assassi, MD, MS, Director of the Division of Rheumatology at University of Texas – Houston; Gloria Blecha, Director of Community Engagement at Scleroderma Research Foundation; Francesco Boin, MD, Director of the Rheumatology Division, Kao Autoimmunity Institute, Cedars-Sinai Medical Center; Lorinda Chung, MD, MS, Director of the Scleroderma Program, Professor of Medicine (Immunology and Rheumatology) and Dermatology at Stanford University School of Medicine; Tracy Frech, MD, MS, Director of the Systemic Sclerosis Clinic at University of Utah & Vanderbilt University; Pravitt Gourh, MD, Head, Scleroderma Genomics and Health Disparities Unit at National Institute of Arthritis and Musculoskeletal Disease; Dan Kastner, Distinguished and Senior Investigator at National Institute of Arthritis and Musculoskeletal Disease; Zsuzsanna McMahan, MD, MHS, Associate Professor of Medicine in the Division of Rheumatology at John Hopkins University School of Medicine; Kathryn Torok, MD, Director of the Pediatric Scleroderma Clinic at Pittsburgh Children’s Hospital; and Roham Zamanian, MD, Associate Professor of Medicine (Pulmonary and Critical Care Medicine) at Stanford University School of Medicine.
About Scleroderma Research Foundation (SRF)
The Scleroderma Research Foundation is the single largest investor in scleroderma research in the U.S., focused on bringing the best minds in science together to find a cure for scleroderma. The SRF was established in 1987 by patient-turned-activist Sharon Monsky, when research on this potentially life-threatening illness was nearly nonexistent. Sharon lost her battle to the disease in 2002, but her vision lives on today, as the SRF remains committed to funding the most promising research aimed at improved therapies and finding a cure. Through the generosity of donors, the SRF has invested more than $39 million dollars to date in scleroderma research, funding and facilitating research at top universities such as Johns Hopkins University School of Medicine, Stanford University, and University of California, San Francisco, so that—one day—no one will suffer from scleroderma. Stay engaged with SRF at http://srfcure.org and via social media: Twitter, Facebook, and Instagram.
