Scleroderma Research Foundation

For Caryn I. (dx 2023), making a planned gift to the Scleroderma Research Foundation was more than just a financial decision—it was an investment in hope for a future without scleroderma. "I chose to make a planned gift to the SRF as I am hopeful for the research that they are doing to progress further along," she says. "Research projects, clinical trials, collaborative efforts, etc. all combined will be very impactful to achieve the ultimate end goal of finding a cure." Caryn’s experiences with scleroderma began with a series of upsetting symptoms. In early 2022, she started experiencing tightness in her calves, swollen fingers, and soreness in both hands. These symptoms, along with testing for carpal tunnel syndrome, eventually led her to a confirmed diagnosis of Raynaud’s and scleroderma in late 2022. More extensive testing in January 2023 revealed that Caryn had diffuse cutaneous systemic sclerosis (dcSSc), a more severe form of the disease. "Initially, I had never heard of scleroderma. Then I started consulting Dr. Google, which obviously was a mistake," she recalls. Despite the physical limitations brought on by scleroderma like losing dexterity and flexibility in her hands and having to give up bicycling—Caryn refuses to let the disease define her. These days, she focuses on staying positive, embracing her love for jazz music, collecting shoes, and enjoying chocolate. "I try to live my life with me in control, not scleroderma," she explains. As someone living with scleroderma, Caryn is deeply invested in the need for continued research. "Selfishly, I want a cure to be found," she says. "The SRF’s efforts give me hope. They tell me it’s not all gloom and doom for those of us living with scleroderma." It’s this drive for progress that led Caryn to make a planned gift to the SRF. "A planned gift will help advance the research needle along faster," she says. "This is of utmost importance for the generations of today, tomorrow, and future generations to eradicate this disease." "I sincerely hope that one day the SRF will no longer exist, as that means a cure has been found and the need for research will no longer be needed," she says. By making a planned gift, Caryn is helping to make that vision a reality.

October 23rd marks what would have been the 71st birthday of Sharon Monsky, the founder of the Scleroderma Research Foundation. Sharon launched the SRF in 1987 with a vision—knowing that although a cure might not come during her lifetime, the key to finding one was through investing in innovative research. Though Sharon passed away from complications of scleroderma in 2002, her mission and vision live on today. Her unwavering dedication and her gift for rallying others to the cause have propelled the SRF to become the nation’s leading nonprofit funder of scleroderma research. Sharon's belief in the power of scientific discovery remains at the center of all we do at the SRF. We carry Sharon's legacy with us every step of the way, as we continue to advance research toward improved therapies, and one day a cure for scleroderma.

Let's talk about the most common type of scleroderma: limited scleroderma. Limited scleroderma affects about two-thirds of systemic sclerosis patients. It’s sometimes called CREST Syndrome, because of these commonly associated physical characteristics: 🔹 Calcinosis—hard, painful calcium deposits in the skin. 🔹 Raynaud’s Phenomenon—when the feet and hands turn white, then blue, then red in response to cold or stress. 🔹 Esophageal problems—trouble swallowing or acid reflux. 🔹 Sclerodactyly—tightening of the skin on the fingers and toes. 🔹 Telangiectasias—small red spots due to dilated blood vessels on the face, lips, forearms, or fingers. Limited (CREST) scleroderma usually progresses more slowly than diffuse scleroderma. Chronic pain, loss of mobility, and disfigurement are possible. Treating limited scleroderma symptoms is very important. The disease can still be life-threatening. It is critical to monitor for organ damage. Serious complications can occur related to the esophagus, other parts of the gastrointestinal tract, and the lungs. To learn more about scleroderma complications and treatments, please visit our website: https://bit.ly/4feSL14

“As an athlete, you push through pain, so I didn’t think too much of it at first,” Erion M. (dx 2008) says of his initial scleroderma symptoms. In 2006, Erion was a collegiate basketball player at Southern Oregon University, when he first began noticing that something was wrong. “I was playing back-to-back games, and I started feeling more exhausted than usual,” he recalls. “My endurance dropped, and my hands began to swell.” As time went on, his condition worsened, as he began struggling with cold intolerance and acid reflux. It wasn’t until two years later that he received his diagnosis—scleroderma. “I went to a doctor in San Francisco who finally figured it out,” he says. “They did a skin score test and told me, ‘You won’t play basketball or work probation anymore. Get ready for a life change.'” “This was before Google was a big thing. I didn’t know what scleroderma was, and there weren’t many resources,” he says. “I felt like I was figuring it out alone.” In addition to his partnership with the SRF, Erion seeks to facilitate the community he wished he had. He currently leads support groups for BIPOC individuals and for men. In recent years, eager to not let his diagnosis define him, Erion has embraced the challenge of exploring various adaptive sports while living with limited mobility, range of motion and dramatic weight loss. “I just wanted to feel like an athlete again and though I may not do things the conventional way, I’m always willing to try. I have tried everything—table tennis, skiing, kayaking, even equestrian,” he says with a laugh. “But you will never see me on a dancing horse. It’s just not a good look for me.” Erion is a strong advocate for scleroderma research, as he wants others to be able to maintain their quality of life despite the challenges of the disease. “It’s terrible to see people have their bodies attacked from the inside, since it stops them from being able to do the things they once loved,” he says. “I am hopeful that more research can help prevent scleroderma from happening or progressing, and change people’s lives.” Erion, thank you for sharing your story and for your dedication to raising awareness around this challenging disease. At the Scleroderma Research Foundation, we are equally committed to advancing research aimed at developing improved therapies and, ultimately, finding a cure for scleroderma. To learn more, please visit our website: srfcure.org

✨🎤 TBT to some of our favorite CCHC moments! 🎤✨ From hilarious performances to mouthwatering meals, we've shared so many great memories together at Cool Comedy • Hot Cuisine—all in support of scleroderma research. Don't miss your chance to be part of this year's event! All the info you need to know: When: October 29th at 6:30 PM Where: The Fairmont Century Plaza in LA Featuring: John Mayer and Jeff Ross, Bob Saget Legacy Award Recipients, alongside Whitney Cummings, Alex Edelman, Chris Hardwick, & Jim Jefferies Co-Chairs: SRF board members Susan Feniger and Regina Hall alongside Caroline Hirsch and Kelly Rizzo Purchase tickets or make a donation, and help accelerate research for a cure: https://lnkd.in/gH4q-qEj

Why is scleroderma often difficult to diagnose? 🔎 Diagnosing scleroderma is complex because there isn’t a single test that can confirm it. To make a diagnosis, a doctor who suspects scleroderma will ask many questions about what you are experiencing and have experienced over time. They might ask if you’re dealing with heartburn, difficulty swallowing, digestive issues like bloating or constipation, unexplained weight loss, fatigue, or aches. They’ll also ask if your hands turn white when you’re anxious or cold or if you have a persistent cough. During a physical exam, doctors look for signs like skin swelling or tightening, glossy or discolored skin, changes in blood vessels on your hands, face, or around your nails, and hard lumps in the skin. They might also check for high blood pressure and listen for crackling sounds in your lungs. If they suspect scleroderma, the next step is often a blood test called an antinuclear antibody (ANA) test to screen for autoimmune diseases. If the result is abnormal, more specific tests for scleroderma autoantibodies might be ordered to confirm the diagnosis. Additional tests could include a blood count, skin biopsy, and checks of the lungs, heart, and digestive system. To learn more about diagnosing scleroderma, as well as its complications and treatment options, please visit our website: https://bit.ly/45gjUw4

Could there be a link between cancer and scleroderma? Hear what Dr. Ami Shah has to say in this SRF Patient Forum clip 🎥 Dr. Ami Shah (Professor of Medicine and Director of the Division of Rheumatology, Johns Hopkins University School of Medicine) examines cancer screening recommendations for individuals with scleroderma. Her session covers reviews data linking cancer to scleroderma, discusses implications for cancer screening in patients with a recent scleroderma diagnosis, and describes the challenges in cancer care in patients with scleroderma. To learn more about cancer screening & therapy for patients with scleroderma, check out the full session featuring Dr. Shah on our YouTube channel: https://lnkd.in/gUaWwu5T The 2024 SRF Annual Patient Forum, “Collaborating for a Cure,” took place on June 3 as part of our participation in Scleroderma Awareness Month. The 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

"By holding this fundraiser, I hope that others are inspired to learn more about scleroderma and about people within the community," says Sofia Q., (dx 2006) who recently hosted a Facebook birthday fundraiser in support of the Scleroderma Research Foundation. "The community deserves visibility and a cure." "My journey fighting scleroderma started in elementary school, and continues to be a significant part of my life," Sofia explains. Shortly after her 8th birthday, Sofia first noticed a thick white streak of skin on her forehead. "I remember us waiting to see if it would change or go away on its own, but it soon became clear that it wasn't going anywhere," she recalls. "I also remember clearly the first dermatologist that told my father it could be scleroderma," she says. Over the next several months, Sofia and her family visited several physicians, who all confirmed the diagnosis. These days, Sofia reflects on her scleroderma journey with gratitude. "Regardless of the constant illness and fatigue that comes with treatment, I am immensely grateful that treatment options were even available to me," she says. "I have seen that scleroderma can have devastating effects on a person's life, as well as the lives of their loved ones. I would love to see the day when no one else needs to lose their life from this disease." Sofia's commitment to research stems from a desire to change the future for those living with scleroderma. “There is no cure, and since it is so rare, not many people in the world know about it,” she says. “The Scleroderma Research Foundation aims to change both of those things, and it is an honor to be able to contribute to its cause. " By hosting her recent fundraiser, Sofia hopes to inspire others to join her in spreading awareness. “Even if people are unable to donate monetarily, it still gets the word out about scleroderma,” she says. “At the end of the day, it is the people fighting scleroderma who inspire me.” Thank you, Sofia, for sharing your story and for your dedication to raising awareness about this challenging disease. If you’d like to make a difference in the fight against scleroderma, consider hosting your own Facebook fundraiser. Learn more: https://bit.ly/2MZErxa

✨ Big news about Cool Comedy • Hot Cuisine from event Co-Chair @KellyRizzo! ✨ "Cool Comedy Hot Cuisine 2024 benefitting @srfcure is going to be SO special. Not only is the Bob Saget Legacy award going to @johnmayer and @therealjeffreyross but Jeff is also hosting and we have Whitney Cummings, Jim Jefferies, Alex Edelman, and Chris Hardwick performing!! And making the night truly epic, John Mayer will also be performing. I can’t tell you how proud Bob would be of this event and that everyone is still coming together to help fight this cruel disease. This truly would mean everything to him." -Kelly Purchase tickets or make a donation, and help us realize Bob's vision of ending scleroderma: srfcure.org/cchc #scleroderma #sayscleroderma #srfcure

Did you know that Raynaud's phenomenon affects 90% of people living with scleroderma? We are joining the Raynaud's Association to raise awareness about troubling condition that causes blood vessels to overreact to cold or stress, leading to numbness, pain, and color changes in the fingers and toes. Though often dismissed as a minor inconvenience, Raynaud's can significantly impact quality of life. For many, everyday tasks—like holding a cold drink or reaching into the freezer—can trigger symptoms. Early diagnosis and management are key to improving well-being and reducing complications. Everyone can raise awareness by sharing information, attending events, or posting the Awareness Month graphic. Join us and help break the ice on Raynaud's, creating a warmer environment for those affected. Learn more about how you can get involved: https://bit.ly/3XLiBCV #raynaudsawareness #raynaudsphenomenon #scleroderma #sclerodermaawarenesss #sclerodermaresearch #srfcure