The Scleroderma Foundation evolves into the National Scleroderma Foundation to help those affected by scleroderma find their best path and live better.
DANVERS, Mass. – January 11, 2022 – The Scleroderma Foundation, a national nonprofit that advances medical research, promotes disease awareness and provides support and education to people with scleroderma and their families and support networks, today announced that it will now be known as the National Scleroderma Foundation to help reach and educate a larger audience and connect more people in the scleroderma community with the resources they need. The National Scleroderma Foundation also relaunched its website and unveiled a new logo to accompany the name change. The National Scleroderma Foundation helps connect the community of 300,000 Americans living with scleroderma and funds innovative research to discover the cause, understand the mechanism, and overcome the disease forever.
“The scope of our work is nationwide,” said Mary Wheatley, CEO of the National Scleroderma Foundation. “We need all hands on deck in the fight against this disease. That includes families and volunteers, support groups that inspire others by sharing their journeys, leading clinicians and researchers and many more who we want to connect to our scleroderma community. These connections will help increase support for those affected by scleroderma, drive greater awareness of the disease, and hopefully lead to finding a cure.”
Scleroderma is a rare rheumatic disease that affects connective tissue and the vascular system producing excessive collagen that causes fibrosis in the skin (localized) or in internal organs (systemic sclerosis). The result can be disfigurement and disability, and for some it can be life-threatening. No one knows what causes the rare autoimmune disease and there is no cure. Scleroderma most often affects women ages 25-55, but also affects kids and teens in the form of pediatric scleroderma.
One of the most challenging things about scleroderma is that it shows up differently in each person making it more complicated to diagnose and treat since there is not one clear path. The National Scleroderma Foundation knows that no two journeys are the same, and that it’s essential that people affected by the disease find the resources that help them live better with scleroderma. No matter where an adult or a child is in their journey, or what kind of scleroderma they have, the National Scleroderma Foundation can help find their best path.
Scleroderma is a rare disease that affects connective tissue and the vascular system. Generally classified as an autoimmune rheumatic disease, an overproduction of collagen (fibrosis) hardens tissue and damages organs. Commonly affecting the skin (called localized), scleroderma also affects internal organs (systemic sclerosis) and can be life-threatening. Anyone can have scleroderma. No one knows what causes the disease, although there are many clues including genetic predisposition. There is no cure and no drugs that halt the progression of the disease or reverse it. The fibrosis at the center of scleroderma makes it prototypic for all other fibrotic diseases.
ABOUT THE NATIONAL SCLERODERMA FOUNDATION
The National Scleroderma Foundation is comprised of thousands of individuals across the United States united by their shared mission to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families, and support networks. As the leading nonprofit funder of peer-reviewed scleroderma research, the Foundation fosters innovative research to discover the cause, understand the mechanisms and overcome scleroderma forever. The Foundation’s Medical & Scientific Advisory Board features world-renowned scleroderma experts who advise on health-related policies. The Foundation’s signature National Scleroderma Conference provides access to leading scleroderma experts and up-to-date information, while serving as the central meeting ground for the scleroderma community. And, the Foundation’s network of chapters operates in 32 states and Washington, D.C. to provide emotional support and scleroderma education to individuals and families and to drive fundraising to fuel the mission. To learn more, visit www.scleroderma.org.
Original Release: January 10, 2022