Meet One Family Supporting UPMC Children’s Excellence in Scleroderma Research

The recent passing of television star Bob Saget has put scleroderma research in the national spotlight – research that’s breaking ground right here at UPMC Children’s Hospital of Pittsburgh.

Saget lost his sister to the disease three decades ago and has dedicated his life to helping find a cure. His mission for a cure led him to meet Sophie Anne, a scleroderma patient who is receiving treatment at UPMC Children’s Hospital of Pittsburgh.

Sophie Anne has been treated at UPMC Children’s since she was 7 years old under the care of Dr. Kathryn Torok, who has been leading the National Registry for Childhood Onset Scleroderma for over 10 years, collecting clinical and biological data over time to help find the reason and hopefully a cure for pediatric scleroderma. Most recently, in fall of 2021, UPMC Children’s became the only children's hospital with a dedicated autologous stem cell transplant protocol for juvenile scleroderma.

Scleroderma (also known as systemic sclerosis) is an autoimmune disease that attacks the skin and organs and leads to thickening, hardening, and scarring.

Sophie Anne and her parents, Jeff and Martha recently shared their connection to Saget on NBC’s Today. Watch it here.

The Seaman family remains grateful for the expert care they’ve received at UPMC Children’s. You can read more about Dr. Torok’s unique expertise and help more children and help more children like Sophie Anne receive care by donating.

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