Scleroderma Community Deeply Saddened by Loss of Bob Saget

The sudden loss of Bob Saget on Sunday, January 9, 2022, is a terrible loss for his family and the entire scleroderma community. Bob was an incredible advocate for scleroderma and he will be greatly missed. Motivated by the passing of his sister, Gay, at the age of 47 in 1994 from systemic sclerosis, Bob devoted his life to raising awareness of the disease and funding for scleroderma research. His Hollywood career opened doors for Saget to help people with scleroderma. In 1996, he directed a television movie, “For Hope,” that used his sister’s experience as the inspiration for a story about the life-threatening challenges presented by scleroderma. Saget was a long-time board member of the Scleroderma Research Foundation, a colleague and collaborative organization of the National Scleroderma Foundation.

The National Scleroderma Foundation leadership and staff offer their deepest condolences to the Saget family, friends, and colleagues.  As we begin the new year with a renewed focus on improving the lives of those affected by this complex disease, we are grateful for the impact he made in supporting scleroderma research that will ultimately lead to discovering the cause, understanding the mechanism, and overcoming scleroderma forever.  Bob Saget’s legacy will live on as we band together to be a relentless force in finding a cure for scleroderma.


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.


Founded as a 501(c)(3) charitable organization in 1998, 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. Supported by a network of thousands of individuals across the United States, the Foundation helps those living with scleroderma by funding research to discover the cause, to understand the mechanism, and together, to overcome this disease forever.

Orignal Release: January 10, 2022

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Steve Sookikian
Director of Communications
(978) 624-1243