Scleroderma Research Foundation

What genetic factors drive juvenile systemic sclerosis? 🧬 In this video, Dr. Kathryn Torok, SRF-funded researcher and pediatric rheumatologist at Pittsburgh Children's Hospital, discusses her work on the Identification of Novel Pathogenic Genes in Juvenile Systemic Sclerosis project—AKA the Trios project. This study examines genetic factors that could lead to better treatments for young people living with juvenile systemic sclerosis. Watch the video to learn more! At the Scleroderma Research Foundation, research is at the center of all we do to find a cure. We find, fund, and facilitate the most promising, highest-quality research aimed at improved therapies and ultimately, a cure for scleroderma. To learn more about research projects funded by the SRF, please visit our website or link in bio: https://lnkd.in/g3S5abY9 #srfcure #sclerodermaresearch #scleroderma #sayscleroderma

Mark your calendars for an informative ILD Day Webinar! 🫁 The Scleroderma Research Foundation is proud to join nine partnering organizations in hosting the 4th Annual National Interstitial Lung Disease (ILD) Day. On September 18 at 12 p.m. CT, join the Pulmonary Fibrosis Foundation for "The Journey to Diagnosis: Process, Evaluation, and Your Care Team," featuring Dr. Sonye Danoff (Assistant Professor, Johns Hopkins Medicine). This insightful webinar will cover how doctors recognize ILD, finding the right treatments, understanding your care team's roles, and how to advocate for yourself. About 15% of people living with scleroderma suffer from ILD, which is one of the most serious complications of scleroderma. ILD occurs when there is inflammation and scarring to the lung tissue that supports the alveoli—the air sacs within the lungs. Over time, this scarring, called pulmonary fibrosis, makes it difficult to breathe in and out, and reduces the amount of oxygen that can reach the bloodstream. Registration for the webinar is open now—secure your spot at this informational event: https://bit.ly/3yELVTe Can't make the event? No worries! Registrants will be sent a link to the recording and all webinars are uploaded to the PFF YouTube channel. ILD Day is presented by the following partners: Arthritis Foundation, PF Warriors, National Scleroderma Foundation, Foundation for Sarcodosis Research, Pulmonary Fibrosis Foundation, The Myositis Association, Scleroderma Research Foundation, Sjogren's Foundation, and the Wescoe Foundation for Pulmonary Fibrosis.

Wine & Dine and Give Back! 🍷🍽️ On June 24th, Grove Wine Bar Co-Founder Beth Lasita hosted a fundraiser for Scleroderma Awareness Month. All five Grove Wine Bar locations participated, generously donating 10% of their net sales to the Scleroderma Research Foundation. In total, they raised over $5,500 to advance research toward a cure. Beth and her husband Tony are longtime Cure Crew members who are dedicated to raising funds and awareness in honor of Beth’s mother, Betty, who lost her battle with scleroderma 15 years ago. "29 years after my mother’s diagnosis, we still have no cause or cure," Beth says. "But we do have medical procedures and strong community support to help those living with the disease. In mom’s memory, we continue to advocate for awareness and finding a cure!" We are deeply grateful for the unwavering support of Beth, Tony, and their local community, whose impactful efforts are helping those with scleroderma live fuller lives and bringing us closer to a world without scleroderma. Learn more about how you can make a difference by joining the Cure Crew: https://bit.ly/4dJLi9J or link in our bio. #srfcure #sclerodermaresearch #scleroderma #sayscleroderma

Save the date for Cool Comedy • Hot Cuisine (CCHC) on October 29 at the Fairmont Century Plaza in Los Angeles! 🎙️ CCHC is always an unforgettable evening of laughter and fine dining to raise funds for scleroderma research. This year's event will be extra meaningful as we celebrate the recipients of the 2024 Bob Saget Legacy Award: John Mayer and Jeff Ross. Both were dear friends of beloved SRF Board Member Bob Saget; they each have a long and generous history of helping him raise funds and awareness for scleroderma research. This award recognizes those who, like John and Jeff, follow in Bob’s footsteps to shine a spotlight on scleroderma and raise funds for a cure. We're excited to share that in addition to being honorees, Jeff will be your incredible host for the evening and John will share an unforgettable performance! And we can't say thank you enough to the event co-chairs—Susan Feniger, Regina Hall, Caroline Hirsch, and Kelly Rizzo—for their hard work in bringing this fundraiser for a cure to life. CCHC features some of the world’s greatest comedians, musicians, and performers (2024 talent line-up to be announced this fall). All proceeds go directly towards the SRF’s mission, supporting our cutting-edge research program & educational outreach. Sponsorships are now available. Learn more: https://bit.ly/4dNQc5w Questions about becoming a sponsor? Please get in touch with Kate Ceredona, Director of Philanthropy, at kate@sclerodermaresearch.org. P.S. Stay tuned—individual ticket sales are coming soon!

Make an impact in the search for a cure to scleroderma. 🔬 Help advance scleroderma research by participating in research studies. Your participation helps researchers better understand the unique ways this disease affects people and brings us closer to a world without scleroderma. Here’s how you can get involved: 🔹 Join the CONQUER Registry: The CONQUER Registry is a first-of-its-kind nationwide patient registry and biosample repository aimed at improving care and developing more effective, personalized therapies for SSc patients. 🔹 Consider enrolling in CONQUEST: The CONQUEST study is a scleroderma clinical trial for people with systemic sclerosis associated interstitial lung disease (SSc-ILD). Participants help progress research to potentially uncover new SSc-ILD treatment options. 🔹 Explore clinical trials: Clinical trials are research studies in which people volunteer to help find answers to specific health questions. Joining a clinical trial is a meaningful way to get involved with research and help find a cure. Learn more about how you can participate in innovative research that aims to improve therapies and ultimately, find a cure: https://bit.ly/3WtHOCd

"My original symptoms were not concerning," says Payton C. (dx 2010). "Around 2008-2009, both my shoulders were always sore and aching, but I just took it as being caused by my sleeping." Though he later also noticed an itchy discoloration on his back, Payton continued to not pay these symptoms much mind. Then, the next year, Payton underwent a period of intense stress, which led to his first experience with Raynaud's phenomenon. "Both of my hands turned blue, which really freaked me out," he says. A visit to his primary care physician led to an initial diagnosis of lupus, but further testing with a rheumatologist confirmed that he had diffuse scleroderma, a disease Payton had never heard of before. Later on, in 2012, he was diagnosed with morphea at Duke Hospital and began receiving treatment from Dr. Ankoor Shah, who has contributed to the SRF Patient Forum. "Dr. Shah was the best thing about moving to North Carolina," he says. Payton has experienced a number of challenging symptoms throughout his scleroderma journey, including skin tightening, calcium deposits in the tendons of his shoulders, and digital ulcers—one of which has resulted in an amputation up to his knuckle. However, despite struggling with these complicated issues, his scleroderma diagnosis did propel him to make a major positive change in his life. In 2015, Payton began transitioning from female to male. "This disease really pushed me to take that leap and live with no regrets," he says. These days, Payton does not let his symptoms hold him back from being active. "I work out with weights 3 times a week, do all my lawn work and any remodeling on the house," he says. "I’m not as flexible but try to stretch or do yoga." "I had never heard of nor knew anyone with scleroderma. As I did research, I was able to find support groups, which are so helpful since they allowed me to talk to people with the disease who have a vested interest in helping others," he says. "I really rely on scleroderma organizations to keep me informed and advocate on all those with scleroderma." Thank you, Payton, for sharing your journey, raising awareness, and contributing to the search for a cure to scleroderma. #srfcure #sclerodermaresearch #scleroderma #sayscleroderma

The SRF 2024 Research Challenge is almost over. And the generosity of this community has blown us away—you all have contributed an incredible $97k to date to accelerate research progress! But we still need your help to make it across the finish line. There's only $3k left to go. Your support makes a real difference for everyone impacted by scleroderma. Will you help us drive research forward? Whether you make a gift of any amount, share this with a friend, or spread the word about scleroderma and why research is important, you help move us closer to a world without scleroderma. Thanks for standing with us in the search for a cure. Donate today at: https://bit.ly/3RWrUOo #sayscleroderma #sclerodermaresearch #srfcure #scleroderma

The CONQUEST team recently had the incredible opportunity to visit Japan! 🇯🇵 CONQUEST is a global platform clinical trial created by the Scleroderma Research Foundation with input from partner biopharmaceutical companies to accelerate the development of possible new treatments for scleroderma. In Tokyo, the CONQUEST team met with dedicated physicians who are part of this international effort, providing training on how the study works and answering their questions. By creating a global network of scleroderma treatment centers, CONQUEST aims to make a widespread impact, and it is currently enrolling patients! We encourage individuals who have SSc-ILD to consider participation in CONQUEST. To learn more, please visit: https://bit.ly/46LaZU0 #scleroderma #srfcure #CONQUEST #sclerodermaresearch #sayscleroderma

Most people living with scleroderma have mild to severe gastrointestinal problems. This can appear in many forms and involve different levels of risk, from simple indigestion to esophageal blockage. The GI tract in our body is involved in consuming and processing the food we eat and eliminating waste. In scleroderma, fibrosis (scarring) makes the walls of the gut thicker and the muscles don’t work as effectively. This affects the way food is moved through your body and digested and causes digestive problems. Some GI symptoms scleroderma patients may have include stomach pain, difficulty swallowing, and acid reflux, nausea, heartburn or indigestion, and changes in appetite. Fortunately, most symptoms can be managed with help from your healthcare team. The GI system is complex. Treating GI symptoms is important but diagnosis and treatment will differ according to the location of the symptom or problem. For more information about scleroderma complications and treatments, visit our website or link in bio: https://bit.ly/3u5AlOE #scleroderma #srfcure #sayscleroderma #sclerodermaresearch

Let's talk CAR T therapy—check out this highlight from the 2024 Patient Forum! 🔬 In this clip from the 2024 Patient Forum, Dr. Max Konig (Assistant Professor of Medicine, Johns Hopkins University of Medicine) describes the CAR T-cell model, its limitations, and future implications of cellular therapies for scleroderma. To learn more about CAR T-cell therapy, check out the full session featuring Dr. Peter Merkel, Dr. Peter Maag, and Dr. David Shook on our YouTube channel: https://bit.ly/3WCsJxk This year, the SRF Annual Patient Forum “Collaborating for a Cure” was held on June 3, 2024, as part of our efforts for Scleroderma Awareness Month. The forum featured educational sessions on symptom management, new developments in research, and your role in finding a cure for scleroderma. Curious to learn more about the latest advances in managing scleroderma? Catch up on other sessions from this year's event on our full Patient Forum 2024 YouTube playlist: https://bit.ly/3WGVPeK