Solve FSHD exists to fund biotechnology and biopharmaceutical research and development efforts toward finding a treatment and cure for FSHD.
Lululemon Founder Chip Wilson/courtesy CNBC.com
Lululemon Athletica founder Chip Wilson has pledged to donate $100 million to create a new company that would find a cure for Facioscapulohumeral muscular dystrophy type 2 (FSHD2) by 2027.
The new venture, named Solve FSHD, exists to fund biotechnology and biopharmaceutical research and development efforts toward finding a treatment and cure for FSHD, a disorder that the 67-year-old Canadian billionaire has lived with since he was 32 years old.
FSHD is characterized by progressive muscle degeneration and weakness, eventually leading to an inability to groom oneself, lift objects and walk. Wilson stopped playing squash a decade ago due to a significant loss of muscle tissue in his legs, which may eventually compel him to use a wheelchair. He also can no longer lift his squash racquet over his head.
There is no cure for FSHD and symptoms, severity and progression rates can vary. Muscle weakness typically begins in the face, shoulders and hip, with the average onset in most cases occurring in the teen years.
“Solve FSHD will accelerate the underfunded development of drugs and therapies to stop muscle degeneration, increase muscle strength and improve the quality of life for those living with this. I can still walk, but I must be very intentional and present, or I will trip and fall. I do see a day when I will be unable to walk on my own,” Wilson said in a statement.
“FSHD is life-altering and I know my future will be challenging. I prefer not to sit in the stands but go out on the courts with my time and money to help this important cause so very close to my heart. In this way, there is something to smile about for those touched by FSHD,” he added.
FSHD1 is caused by the deletion of large segments of repeating DNA units on chromosome 4, called D4Z4 units. Normally, there are 11 to less than 100 D4Z4 repeats, but with FSHD1, the repeat units are only 1 to 10. This leads to significantly lower DNA methylation and higher DUX4 protein expression. FSHD2 is caused by gene mutations in the structural maintenance of chromosomes flexible hinge domain containing 1 (SMCHD1) and DNA methyltransferase 3 Beta (DNMT3B), resulting in lower DUX4 DNA methylation and higher DUX4 protein expression.
The Solve FSHD website is currently looking for individuals interested in joining the clinical trials.
“The investments of Solve FSHD now to help validate biomarkers and develop new therapies will pay dividends later for any company or researcher pursuing better therapies for FSHD. These investments form the foundation to support future clinical trials and serve as a seed for further funding and investment,” noted Dr. Jeffrey Stratland, an assistant professor of neurology at the University of Kansas Medical Center.
Aside from trial participants, Solve FSHD is calling on scientists, biotech and biopharma firms, muscular degeneration experts and other related researchers to contact the company for opportunities. In February, the venture awarded a $2.8 million grant to the Clinical Trial Research Network through the FSHD Canada Foundation. Solve FSHD said that additional details on the venture’s goals, funding mechanisms and investments will be announced soon.
