The Scleroderma Research Foundation (SRF) is a non-profit, 501(c)(3) organization based in San Francisco. The SRF mission is to fund and facilitate the most promising, highest quality research aimed at improved therapies and, ultimately, a cure for scleroderma. The SRF which operates the most powerful scleroderma research program in the country is led by a committed Board including comedian Bob Saget and celebrity chef Susan Feniger – of whom many have been personally affected by scleroderma.
Scleroderma (or systemic sclerosis) is a chronic autoimmune disease and patients suffering from scleroderma can have a range of symptoms and complications. The disease can affect vital organs such as the kidneys, lungs and heart and can also lead to disfiguring facial changes, weight loss, loss of hand function and other impairment that leads to a severe degradation of quality of life and death. The cause remains undetermined and currently, there is no cure for scleroderma. Approximately 80,000 Americans are affected, with a multiple of that number affected worldwide.
The SRF in collaboration with 12 of America’s top medical research centers announces the launch of CONQUER: the first-ever national, longitudinal patient registry for those suffering from scleroderma.
CONQUER will collect a detailed clinical dataset and blood from thousands of early-stage patients, each followed over several years. This rich database and biorepository will be fundamental to advancing current research and to improving patient care — with the aim of finding a cure for this chronic disease.
“We are thrilled by the significant support and innovation this collaboration will bring to our efforts to eradicate scleroderma,” states Luke Evnin, Ph.D., Chairman of the SRF Board of Directors. Dr. Evnin is a scleroderma patient and a biotech venture capitalist and has been integral in making CONQUER a reality.
“No one should have to suffer as my sister Gay did and I believe collecting robust patient data across the country is a key step to better understanding this horrific disease,” Bob Saget stated in regard to his sister who passed away from complications of scleroderma in 1994.