Scleroderma Research Foundation

How does participating in a clinical trial affect your regular healthcare? ?? Your regular healthcare and the trial team can work together—but how that looks can vary depending on the study design, your condition, and current treatments. Some clinical studies may include tests that overlap with your usual care, while others may involve additional, study-specific procedures. Communication is key to ensuring everything?between your?regular healthcare team and the trial team?is well-coordinated. By working with both?teams, you can ensure you continue receiving the standard of care for your overall health while participating in the trial. Want to explore clinical trials that might be a good fit for you? Check out SRF Carebox Connect — a free, easy-to-use service that helps people with living scleroderma find nearby trials that match up with their condition. Learn more here: https://bit.ly/3WyHBhh

How does scleroderma affect your joints? When scleroderma affects the body, it can impact everything from tendons to joints, leading to changes in mobility. The increased production of collagen associated with scleroderma can cause vascular dysfunction. This can contribute to stiffness, warmth, tenderness, and pain in the joints and muscles. Development of fibrotic tissue can affect movement. Additionally, scarring and thickening of the skin can cause painful contractures of the fingers, wrists, or other joints, causing them to become “stuck” in a flexed position. Aspirin or other non-steroidal, anti-inflammatory prescriptions can help with muscle pain and stiffness. Simple hand and face exercises may ease specific symptoms and gentle cardiovascular exercise that focuses on your entire body (walking, swimming, yoga) can also help. Learn more about scleroderma and its complications on our website: https://bit.ly/3u5AlOE. #sayscleroderma #scleroderma #srfcure #sclerodermaresearch

Being diagnosed with scleroderma is uncommon, but for Missa P. (dx 2023), the experience was even more unique—as it was one she shared with her late mother, Karen (dx 2012). “I watched my mother research ways to manage her scleroderma symptoms, not realizing that one day, I’d be doing the exact same things to manage my own,” she says. Both she and her mother first experienced symptoms of Raynaud's phenomenon in their early 30s. Karen was initially misdiagnosed with lupus, and it took a decade before she received the correct diagnosis of systemic scleroderma. At around the same age, Missa also started to develop symptoms and eventually received a scleroderma diagnosis. Scleroderma changed her mother’s life significantly, causing her to leave work and focus on managing her health at home. “Going out to events was difficult for her, and she preferred to stay at home most times,” Missa explains. For Missa, climate played a huge role in managing her condition. “I lived in Iowa for five years. The winters were too extreme—it would get to -15°F at times," she says. "My job was able to help me move to California, and this has helped keep my Raynaud's episodes down significantly.” Through it all, she remains committed to raising awareness, especially for families like hers, where both a mother and child share the diagnosis. “There may be others going through the same thing. I want to be a voice for them and show that we are a community," she says. In 2022, Missa’s mother passed away from complications of scleroderma, a loss that continues to drive Missa's commitment to supporting research. “My mother wanted to see progress for people with scleroderma. I want the same for future generations,” she says. “Most people don’t even know this disease exists. That’s why research is so important—so we can change that, and one day, find a cure.” We are grateful to Missa for sharing her story and for her dedication to raising awareness. At the Scleroderma Research Foundation (SRF), we share her passion for funding scleroderma research. To learn more about how we are advancing research toward a cure for scleroderma, explore information on our website: https://bit.ly/3RbzL9H

Mark your calendars! The Annual SRF Patient Forum returns Monday, June 2, 2025, kicking off Scleroderma Awareness Month with the latest in research, treatments, and disease management. Don't miss this free virtual event designed for patients, caregivers, and scleroderma advocates! Stay tuned—session topics and registration details are coming soon. Can't wait until June 2? Catch up on all of last year's informative sessions on our YouTube channel: https://bit.ly/3VeDepL

Meet Anoushka Donnelley, SRF’s New Director of Philanthropy! ?? Please join us in welcoming the newest member of the SRF team, Anoushka Donnelley! With more than 14 years of experience in fundraising, she has dedicated her career to building donor relationships and advancing meaningful causes. Anoushka’s journey in philanthropy began unexpectedly as a phonathon caller during college, and she never looked back. Before joining the SRF, she led fundraising efforts at Family House San Francisco, Common Sense Media, Sacred Heart Cathedral Preparatory, and Saint Mary's College. She looks forward to bringing her expertise to our high-impact, low-headcount team as we work toward a future free of scleroderma. Welcome, Anoushka! #srfcure #scleroderma #sclerodermaresearch #sayscleroderma

Last week, the CONQUEST team headed to Argentina to connect with local physicians! ???? CONQUEST is a global platform clinical trial created by the Scleroderma Research Foundation to accelerate the development of potential new treatments for scleroderma. During their time in Buenos Aires, the CONQUEST team engaged with dedicated physicians and research staff, offering in-depth training on the study's design and objectives. Through its growing network of scleroderma treatment centers worldwide, CONQUEST is advancing critical research efforts focused on improving therapies for people living with for people with systemic sclerosis associated interstitial lung disease (SSc-ILD). Want to know if you qualify to get involved with CONQUEST? Take the new pre-screener survey. To access the pre-screener, visit the CONQUEST page on the SRF website, and click "Learn More about enrolling in CONQUEST." From there, click "See if I May Qualify" to take the pre-screener and evaluate CONQUEST as an option for you. To learn more, visit this link: https://bit.ly/4hb7PxA #CONQUEST #sclerodermaresearch #scleroderma #srfcure #clinicaltrials

February may be behind us, but the impact of Raynaud’s Awareness Month carries on! Throughout the month, the community came together to share stories, spread awareness, and educate others about Raynaud's phenomenon and its connection to scleroderma. Thank you to everyone who participated, whether by sharing your experiences online, hosting fundraisers, posting resources, or simply helping others understand what it’s like to live with Raynaud’s. Your advocacy helps drive awareness, earlier diagnoses, and better treatments for those affected by Raynaud's and scleroderma. Do you want to continue making an impact in the search for a cure to scleroderma? Join the Cure Crew, our grassroots community dedicated to raising awareness and funding research. Learn more and get involved today: https://bit.ly/3SCPX5F #RaynaudsAwarenessMonth #Raynauds #scleroderma #sclerodermaresearch #srfcure

Scleroderma research starts with you. Learn more to find out if enrolling in the CONQUER registry is right for you! In 2018, the SRF launched the CONQUER Registry—a first-of-its-kind nationwide patient registry and biosample repository designed to improve care and develop more effective, personalized treatments for scleroderma. CONQUER brings together the largest scleroderma research centers across the U.S. to enroll thousands of patients from all backgrounds. By studying real-world data, researchers can uncover new insights into the disease and accelerate progress toward a cure. Over 1,000 patients have already joined CONQUER—consider joining them. Every participant moves us one step closer to breakthroughs in scleroderma treatment. Learn more about how you can get involved with CONQUER: https://bit.ly/3lLriy5 #SclerodermaResearch #CONQUERRegistry #SRFcure #CONQUER

Rare Disease Day is here: Today, we are coming together to #SayScleroderma and shine a light on the 300,000 people in the U.S. living with scleroderma. More than 300 million people worldwide live with a rare disease, yet many face significant delays in diagnosis due to a lack of scientific knowledge and quality information. The symptoms of rare diseases often overlap with more common conditions, leading to misdiagnoses and creating barriers to proper care. With over 7,000 rare conditions, including scleroderma, the rare disease community is vast—but awareness and research remain critical. At the Scleroderma Research Foundation (SRF), we recognize the critical need for research in rare diseases, which is why we are committed to advancing the science behind scleroderma and working toward a cure. Want to make an impact? You can: ?? Share educational resources ?? Tell your story on social media ?? Host a fundraiser or donate to research To celebrate the power of awareness, we’re hosting a special giveaway! Let us know how you participated by filling out our form, and you’ll be entered for a chance to win: https://bit.ly/41AAWpi

Did you know that 300 million people worldwide live with a rare disease? In this video, Elisabeth K., PhD (dx 2021) shares why she believes that funding research on rare diseases, like scleroderma, is so critical. As both a scientist and someone directly impacted by scleroderma, she lists the top 3 questions she has that she wants research to answer. Here at the SRF, we’re singularly-focused on supporting the most-promising research to find a cure. That means funding a diverse portfolio of projects aimed at answering questions like these. We actively recruit experts from the fields of rheumatology, immunology, genetics, and fibrosis, as well as experts in cutting-edge technologies, to join the scleroderma research community. Scleroderma is one of more than 7,000 conditions classified as rare diseases, and we stand with the entire rare disease community to bring attention to how these diseases affect people and the need for research. Be sure to join us for Rare Disease Day on February 28 to raise awareness and drive action for the rare disease community. Whether you share educational resources, post your story on social media, or host a fundraiser for the SRF’s research program, every effort makes a difference. As a thank you for taking action, we’re holding a special give away. Let us know how you got involved this Rare Disease Day by filling out our form, and you’ll be entered for a chance to win. Access the form here:?https://bit.ly/41AAWpi #RareDiseaseDay #scleroderma #sclerodermaresearch #RareDiseaseAwareness