Scleroderma Research Foundation

?? This Thanksgiving, we’re grateful for YOU ?? To the incredible scleroderma community—patients, families, researchers, donors, and supporters—you inspire us every day. Your dedication helps bring us closer to a world without scleroderma. Thank you for being part of the search for a cure. Together, we’re making a difference. Wishing everyone a warm and wonderful holiday!

Research shows pulmonary hypertension impacts African Americans with scleroderma more severely—how can we address this? November is Pulmonary Arterial Hypertension (PAH) Awareness Month, a time to spotlight the challenges faced by those affected by this life-threatening complication of scleroderma. The incidence of severe scleroderma-associated pulmonary hypertension (high blood pressure between the heart and lung; a life-threatening complication in scleroderma) is reported to be higher amongst African Americans compared to others, causing African Americans affected by scleroderma to experience greater disease severity and worse disease burden as measured by morbidity and mortality. Socioeconomic factors and impaired access to health care do not fully account for the increased disease severity among African Americans with scleroderma, and attempts to elucidate these factors have been hindered by the relatively small size of studied cohorts in this population. The Scleroderma Research Foundation recognizes the importance of addressing disparities in scleroderma outcomes. Through past research efforts, we’ve worked to better understand the clinical impact of scleroderma in African Americans and to uncover genetic and other factors that may contribute to the severity of the disease. While these initiatives have advanced our knowledge, continued research and collaboration are essential to closing these critical gaps and improving outcomes for all. Learn more about PAH complications and treatments on our website: https://bit.ly/3ASt8kN

Cabaret for a Cure: Molly raises funds for scleroderma research through 2-night show! ??? Earlier this month, Cure Crew member Molly S. dedicated the proceeds from her 10th annual 2-night concert, "Dumb Diseases", to the SRF. For the past two years, she has dedicated her fundraiser to scleroderma research in honor of her best friend, Jess, who lives with scleroderma. "For the last 15 years, I have watched my best friend struggle with this terrible disease. I've watched her put on many a brave face in adversity, pain and hopelessness," she says. "I want there to be more hope, and in this case, money = hope!" Cure Crew members like Molly make a critical impact in the search for a cure, and we are sincerely grateful for their partnership. Learn how you can get involved with the SRF Cure Crew on our website: https://bit.ly/3SCPX5F Pictured: Jess (left) and Molly (right)

A huge thank you to the organizers and everyone who made #ACR24 a success! ?? Members of the SRF Leadership team connected with physicians, health professionals, and scientists from around the globe this month at the American College of Rheumatology's Convergence in Washington DC. This conference is the premier educational event for those who research or treat rheumatic and musculoskeletal diseases. In addition to participating in multiple days of conference sessions, the SRF also hosted convening for Principal Investigators (PIs) and Research Coordinators (RCs) involved in two of our priority research projects: ?? CONQUEST:?Leaders of the SRF?CONQUEST?platform clinical trial?for SSc-ILD conducted one-on one meetings throughout the week and hosted a networking receptions to share progress updates, facilitate peer-sourced support, and discuss ways to advance the progress of this groundbreaking platform trial.?For more information about CONQUEST investigational medications or participation criteria visit?https://lnkd.in/gpDzeNab ?? CONQUER Patient Registry: PIs and RCs from 19 participating sites (including 2 new sites just added in the past month) participated in 2 back to back meetings focused on sharing best practices on data quality, status updates of published manuscripts using CONQUER Data, innovative approaches to participant engagement and more. The SRF team was invigorated by the insightful discussions and grateful to collaborate with such dedicated colleagues as we work together to end scleroderma. Pictured: CONQUER Research Coordinators & Data Control Center team, CONQUEST Platform Clinical trail leadership team, and Brynna Morrison, Project Manager CONQUER?Data Control Center #srfcure #scleroderma #sayscleroderma #rheumatology

"You are supporting patients like me in the hopes that one day this disease will cease to exist." - Greg C., dx 2017 Together, we’re making big strides toward our goal of ending scleroderma. And we wouldn’t have come this far if it weren’t for our dedicated scleroderma community. We are all in, thanks to YOU. As we continue to fund life-changing research, your support is vital. Will you make a gift today to help accelerate our research efforts? 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 make meaningful research progress for people like Greg, and all those living with scleroderma. Thanks for standing with us in the search for a cure. Donate today: https://bit.ly/4hSK7aP #srfcure #sayscleroderma #scleroderma #progress

Today marks 28 years since the release of For Hope—a groundbreaking film that brought scleroderma into the public eye like never before. Directed and produced by SRF Board Member Bob Saget, the movie remains the only major motion picture to capture scleroderma’s impact on a family, sharing an honest and moving portrayal of life with this challenging disease. For Hope was inspired by Bob’s personal loss of his sister, Gay, to scleroderma. At the time of filming, he expressed, “This film was inspired by my sister Gay who lost her life to scleroderma when she was only 47. It is incredibly painful to have a loved one experience a condition like this...‘For Hope’ was an emotional film to make, but I know it still brings awareness to scleroderma and why we need research. There will be no improved treatment and there is no cure without the research.” For Hope was instrumental in raising awareness in the 90s and continues to inspire action for scleroderma research today. Though we’ve seen significant progress since its release, we know that search for cure must continue. Join us in honoring Bob’s legacy and his commitment to this cause by sharing this film with others. ??? Watch For Hope here: https://bit.ly/3lY0dnE, or via the link in our bio.

How does pulmonary arterial hypertension affect scleroderma outcomes? Learn from Dr. Mukherjee in this 2024 Patient Forum clip! ???? In recognition of Pulmonary Arterial Hypertension Awareness Month, we're spotlighting an insightful session from the 2024 SRF Patient Forum. In this clip, Dr. Monica Mukherjee, Associate Professor of Medicine at Johns Hopkins University, discusses what pulmonary hypertension is and how imaging methods are increasing early diagnosis and treatment outcomes for scleroderma patients. In her full session, "Heart Disease in Scleroderma", Dr. Mukherjee outlines the cardiopulmonary impacts of systemic sclerosis on patient outcomes and demonstrates how multimodality imaging can help detect, classify, and diagnose issues earlier to improve care. The 2024 SRF Annual Patient Forum, "Collaborating for a Cure", took place on June 3 as part of our participation in Scleroderma Awareness Month. This event offered a range of educational sessions focused on symptom management, the latest research developments, and how you can contribute to the search for a cure. Interested in learning more about the latest advancements in scleroderma management? Explore additional sessions from this year’s event on our full Patient Forum 2024 YouTube playlist: https://bit.ly/3MK7Yv3

?? CONQUEST Featured in New Publication! ?? We are pleased to announce a new publication in the Journal of Scleroderma and Related Disorders featuring the innovative design of the CONQUEST clinical trial. The article details key features of CONQUEST, including its ability to test multiple investigational products in parallel and sequentially, with a shared placebo group that reduces the number of patients needed. Developed by the SRF and expert partners, the CONQUEST trial launched in April 2024 and spans 150+ sites worldwide, with plans to enroll 430 patients in its first iteration. Read the press release on our website to learn more about how CONQUEST is accelerating scleroderma research: https://bit.ly/4fFn6WV

?? Dinking for a difference: Picklepalooza raises over $23,000 for scleroderma research! ?? This year, Beth L. and Lisa D. brought the second annual Picklepalooza to life, hitting the courts for a cause close to their hearts. Beth, a Cure Crew champion with more than two decades of scleroderma advocacy, has organized everything from golf tournaments to restaurant fundraisers since her mother mother's diagnosis in 1997. "In memory of my mother, Betty, we continue to raise awareness as well as funds to find a cure for those who are living with scleroderma," she says. “Before losing her battle in 2009, she asked that we continue the fight because together, we can make a difference." For Lisa, the fight is personal, too—her daughter’s diagnosis has fueled her dedication to supporting the Scleroderma Research Foundation. "We are so grateful for the resources offered by the SRF," Lisa says. "Raising money for this organization ensures our daughter, along with all those with the disease, gets the best support and research possible. The hope of giving them a chance at a healthier future means the world to us." Hosted at the Austin Pickle Ranch, the tournament drew a lively crowd to watch the 52 participants compete for top prizes, score bragging rights, and enjoy an unforgettable day of friendly competition. Let’s hear it for Beth, Lisa, and the whole Picklepalooza team for their incredible efforts benefiting the search for a cure to scleroderma. ?? Want to make a difference? Consider joining Cure Crew—a passionate group of supporters raising awareness and funds for scleroderma research. Visit our website to learn more: https://bit.ly/3SCPX5F #Scleroderma #Picklepalooza #SRFCureCrew #PickleballForACure

"Making information about scleroderma accessible to children and the public is very important to me," says Alvin C. (dx 2017). His determination to educate others led him to write a children's book, "Scleroderma In The Animal Kingdom", designed to help young readers and their families understand the condition through engaging stories and relatable characters. Alvin's journey with scleroderma began unexpectedly in December 2016 when his classmates pointed out that his skin was getting darker. At first, he didn't think much of it, but by January 2017, his symptoms had intensified to joint pain and significant weight loss. "This made us go to the ER in February 2017, where I was first diagnosed with arthritis," he recalls. After undergoing more tests, Alvin was told he had mixed connective tissue disease. It wasn't until later that he received the final diagnosis—systemic scleroderma. "Scleroderma has changed my life completely," Alvin says. "I can't hold anything, I can't walk, and I can’t do most things." Despite these immense challenges, Alvin discovered his own resilience. "I've learned that I can feel weak, but I am strong. I can sometimes feel hopeless, but I am hopeful. The most important thing I've learned is that if I keep going, things can get better." His desire to support the scleroderma community led him to write his book. "I believe that raising awareness is key to building a supportive community," he says. "Together, we can make a positive impact for everyone affected by scleroderma." For Alvin, the hope for a cure drives his support for scleroderma research. "Scleroderma research is vital because it holds the key to changing our lives for the better," he says. "Each study and discovery brings us one step closer to finding a cure—the cure we've all been praying for. I truly believe that with continued research, that day will come." Thank you, Alvin, for sharing your story and for your dedication to raising awareness for scleroderma. If you're interested in helping raise awareness for scleroderma, consider joining the SRF Cure Crew, a grassroots volunteer program that unites members of the scleroderma community to make an impact in the search for a cure. Learn more on our website: https://bit.ly/48EcDZv