National Scleroderma Foundation Hopes New Name Will Increase Reach

Yedida Y Bogachkov PhD avatar

by Yedida Y Bogachkov PhD |

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A woman holds a megaphone to make an announcement.

The Scleroderma Foundation is relaunching itself under a new name, the National Scleroderma Foundation, intending to reach and educate a larger audience and connect more of those affected by scleroderma with the resources they need.

“The scope of our work is nationwide,” Mary Wheatley, CEO of the National Scleroderma Foundation, said in a press release.

The National Scleroderma Foundation, with its relaunched website and new logo, is focused on helping connect the roughly 300,000 Americans affected by scleroderma.

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Scleroderma is a chronic autoimmune disease affecting the skin, connective tissue, and the vascular system. The disease is characterized by excessive collagen production that causes fibrosis, or scarring, of the skin (localized scleroderma) or of internal organs (systemic sclerosis). Scleroderma primarily affects women ages 25–55, but it can also affect children and teens.

The foundation helps fund scleroderma research fostering novel discoveries into the disease cause, its mechanisms, and potential therapies.

The disease’s underlying mechanisms are not well understood. Furthermore, one of the more challenging aspects of scleroderma is that it manifests differently in each person, making diagnosis and treatment difficult.

The newly relaunched National Scleroderma Foundation knows that no two journeys in those affected by scleroderma are the same and that finding helpful resources for living better with the disease is important. According to the foundation, the goal is to help those with scleroderma, whether adult or child, find the best path while on their scleroderma journey.

“The National Scleroderma Foundation’s mission is to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support networks. Our vision is to be a relentless force in finding a cure and improving the lives of people affected by scleroderma,” the foundation states on its website.

Additionally, the foundation’s Medical & Scientific Advisory Board, consisting of scleroderma experts, helps advise on health-related politics, and its National Scleroderma Conference provides access to scleroderma experts and information while serving as a meeting place for the scleroderma community.

“We need all hands on deck in the fight against this disease,” Wheatley said. “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.”

The National Scleroderma Foundation now has chapters in 32 states and Washington, D.C.