Heartland Chapter helps those affected by scleroderma find their best path and connects with a national community
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, announced in January 2022 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 Foundation’s Heartland Chapter serves Iowa, Nebraska, and South Dakota. With this rebrand, the National Scleroderma Foundation will connect those affected by scleroderma to the latest educational and clinical resources, as well as connect the community through events, support groups, treatments and specialists.
“The scope of our work is nationwide,” said Mary J. 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.”
“Our local chapter makes a difference in the lives of those living with and affected by scleroderma,” said Stephanie Fragale, Chapter Advisory Committee Chair. “By becoming the National Scleroderma Foundation, we hope to broaden our reach to the scleroderma community so we can have a greater impact and help more people affected by scleroderma find their best path.”
Scleroderma is a rare autoimmune 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). More than 300,000 Americans live with some type of scleroderma. Today, the face of scleroderma includes people of all ages, genders, and backgrounds. Scleroderma can affect young parents, children, grandparents, and teenagers, causing pain, disability, and death. Thanks to the passion and dedication of volunteer leaders, scientists and supporters, great strides have been made. Yet despite these advancements, the challenges in scleroderma today are greater than ever, requiring committed resources to achieve ambitious goals and outcomes.
ABOUT THE NATIONAL SCLERODERMA FOUNDATION
The National Scleroderma Foundation is a 501(c)(3) charitable organization founded in 1998 to advance medical research, promote disease awareness, and provide support and education to people with scleroderma. Supported by a network of thousands of individuals across the United States, the Foundation aims to help people living with scleroderma find their best path.