Scleroderma Research Foundation

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

Scleroderma is a complex disease that can progress in very different ways in individual patients. Along with the signature skin fibrosis (hardening) that characterizes scleroderma, there are other scleroderma complications related to the skin that may occur. Many people living with scleroderma experience calcinosis, which refers to the abnormal collection of calcium salts which form under the skin and in muscles or tendons. Calcinosis appears as hard, irregular nodules in or under the skin in any area of the body. These deposits vary in size and shape and are located most commonly in the fat pad of the fingertips, as well as on the hands, arms, elbows, knees, and trunk. They can also break the surface of the skin, becoming a lesion and can be skin-colored or white, hard or soft. In severe cases, they can be very painful and limit range of motion. Research and continuing advances in treatment for scleroderma complications give people with scleroderma hope for a healthier future. Being better informed can help you be a more effective advocate in the management of your disease and remain as healthy as possible. To learn more about scleroderma complications and treatments, please visit: https://bit.ly/3u5AlOE

#ThrowbackThursday to 2008: this year's Bob Saget Legacy Award honorees, John Mayer and Jeff Ross, at one of many #CoolComedyHotCuisine events together 🎙️ With their long history of supporting the SRF, John and Jeff embody Bob's determination to advance scleroderma research. The Bob Saget Legacy Award recognizes those who have followed in our beloved SRF board member's footsteps to shine a spotlight on scleroderma and raise funds for a cure. Join us as we celebrate John and Jeff for an unforgettable evening of laughter and amazing food at this year's #CoolComedyHotCuisine on Tuesday, October 29, at the Fairmont Century Plaza in Los Angeles, CA. In addition to being honorees, Jeff will be your incredible host for the evening and John will deliver an unforgettable performance! They are joined by the very funny Whitney Cummings and Alex Edelman—and more special guests to be announced—who are donating their time and talents to support this vital cause. 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. All proceeds go directly towards the SRF’s mission, supporting our cutting-edge research program & educational outreach. ✨ Purchase tickets or make a donation, and help us realize Bob's vision of ending scleroderma: https://lnkd.in/gH4q-qEj ✨ #johnmayer #jeffross #bobsaget #scleroderma #sayscleroderma #srfcure

"Emotionally, it has been a struggle, and physically, it has been very isolating," says Diana V., describing the impact of scleroderma on her daughter, Aryzabella S. (dx 2019), pictured left. "I wish more people understood how lonely this disease can be. Just because someone looks okay doesn’t mean they’re not in pain or dealing with deep fatigue." Aryzabella was first diagnosed with juvenile dermatomyositis in 2013, when she began experiencing muscle weakness, fatigue, and rapid weight loss. After six years of progressing symptoms, she was diagnosed by a rheumatologist with juvenile systemic scleroderma. Aryzabella then went to the Juvenile Systemic Scleroderma Center at UPMC Children's Hospital of Pittsburgh, where she received a stem cell transplant from SRF-funded researcher Dr. Kathryn Torok. Since then, their lives have drastically changed. "Supporting her through this journey has meant I’ve had to be away from my other three children more than I wish due to doctors’ visits and hospital stays," Diana describes. Despite the challenges, Aryzabella remains focused on the positive. "She focuses on the things she can do, not on what she can’t," Diana says. "She’s thankful she can still laugh, eat, see, and live." "She is always proud to talk about her journey and who she is," she adds. "She has a heart so big, I don’t think she even knows it." Diana is deeply passionate about research, recognizing its vital role in improving outcomes for people living with scleroderma. "Scleroderma research is so important because it can lead to faster diagnoses and more testing for people experiencing body changes and pain," she says. "I want people to keep pushing for more help and a cure." The Scleroderma Research Foundation is deeply thankful to Diana for sharing her and Aryzabella's story and for helping to spread awareness. To learn more about how the SRF is advancing research toward a cure for scleroderma, please visit our website: https://bit.ly/3wYKKdw

SRF-founding board member Susan Feniger explains what scleroderma is and how our Cool Comedy • Hot Cuisine fundraiser helps move research forward on live TV, reaching millions of viewers! 📺 As part of a cooking demo with CBS Los Angeles, Susan shared what scleroderma is and why she's passionate about finding a cure. A close college friend of SRF-founder Sharon Monsky, Susan immediately said yes when Sharon asked her to help found the Scleroderma Research Foundation. Since collaborating with Sharon to create the very first Cool Comedy • Hot Cuisine, Susan has played an integral role year after year helping us raise vital funds for cutting-edge research. That's not all she does—she uses platforms like this opportunity with CBS Los Angeles to spread the word about scleroderma because everyone should know what this disease is and does. This year, Susan is Co-Chairing Cool Comedy • Hot Cuisine alongside Regina Hall (a fellow board member), Caroline Hirsch, and Kelly Rizzo. Coming up soon on October 29th, this event will honor John Mayer and Jeff Ross (event host) with the Bob Saget Legacy Award, recognizing their commitment to advancing scleroderma research in Bob's memory. This unforgettable evening at the Fairmont Century Plaza in Los Angeles will feature some of the world's finest comedians and musicians: Whitney Cummings, Alex Edelman, John Mayer, and Jeff Ross—and other special guests to be announced! Learn more about this meaningful event for a cure: srcure.org/cchc

Skin ulcers affect about 50% of people with limited or diffuse scleroderma. Let's break down the basics of what they are and management approaches. For people with scleroderma, skin ulcers most often appear at the tips of fingers (digital ulcers). Skin ulcers may also extend under the fingernails, or to the joints at pressure points like elbows when the skin is stretched too tight. Scleroderma skin ulcers may also occur on the legs or other parts of the body following minor trauma such as a bruise. These sores may be very painful and can make it difficult to use your hands or other parts of your body. Some ways to prevent skin ulcers include avoiding stress and cold, keeping as warm as possible, using Band-Aids, and wearing layers of clothing. Basic wound care and over-the-counter (OTC) medications may help with healing and pain management. Medications for skin ulcers in scleroderma may also be recommended. To learn more about scleroderma complications and treatments, please visit our website or link in bio: https://bit.ly/3u5AlOE

Ally’s Allies tees off against scleroderma 🏌️♀️⛳ ️ On August 28, Ally's Allies hosted the second annual "Golfing for a Cure" event benefiting the Scleroderma Research Foundation. SRF Cure Crew member Ally W. was diagnosed with scleroderma in January 2022 after experiencing years of Raynaud’s symptoms. Since then, her mother Linda has made it her mission to support research and spread awareness through their fundraising nonprofit, "Ally’s Allies." Thanks to the incredible generosity of those involved, this year's event raised $23,165 for scleroderma research. The event began with 64 golfers hitting the course. Following the tournament, an additional 140 supporters joined for dinner, where Ally shared her personal journey with the disease, and Linda, expressed her gratitude to attendees. "We are hopeful and determined that in her lifetime, a cure will be found for this debilitating disease," Linda said. "The only way to accomplish this is through research and awareness." Join us in giving a huge thank you to Ally's Allies for creating such an extraordinary event! And we extend our gratitude to all all who participated. Your generosity enables the SRF to advance research toward a cure for scleroderma. Want to make a difference in the search for a cure? Learn more about how you can get involved with scleroderma advocacy and fundraising as part of the SRF Cure Crew: https://bit.ly/3SCPX5F