Badger Entrepreneur Driving Gene Therapy Cure for CMT
After a decade of searching for the reason our son was physically degrading, Quinn Paulsen (Badger Bob Paulsen ’93’s son) was diagnosed with Charcot-Marie-Tooth (CMT) disease in July of 2023. Bob sold his most recent company in that same week and jumped into learning as much as he can about CMT, the efforts around it, and what we can do to help.
Bob’s initial research connected him with another Badger, Dr. John Svaren who provided a wealth of information and connections that proved incredibly valuable for Bob and the future of CMT. Dr. Svaren is a professor at the University of Wisconsin–Madison and a board member of the CMTA — the largest association for CMT in the world.
CMT is the largest inherited neuropathy in the world today, with more than five times the number of people affected as ALS. CMT causes continuous degradation of nerves and muscles over time, in particular to hands and feet. Many with CMT undergo multiple surgeries, have lifelong braces, require wheelchairs and other support systems, and have deformities in their feet and hands. There are about 200,000 people in the U.S. and approximately three million worldwide diagnosed with CMT. A lot is known about CMT, including the exact genes that are malfunctioning.
Through great effort and collaboration, Bob has worked with the CMTA to align the best genetic experts in the world around Project Foresee, a plan that will drive a known gene therapy solution through the FDA and other logical steps over the next three years. We know the path, and now we can accelerate the cure! We expect that this project will pave the way to cure dozens, then hundreds, then thousands, and possibly millions of patients with CMT.
The Paulsen family is hosting our second annual Foresee Gala — unlocking the Cure to CMT on May 30, 2025, at the Denver Performing Arts Center. Bob welcomes all questions, ideas, and engagement as he leads the effort to “Foresee” the end of CMT4C!
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