The recent news that Lululemon founder Chip Wilson is committing $100 million USD to targeted FSHD research over the next six years has been called ‘game-changing’,generating tremendous excitement and hope in our community. Along with the excitement, patients have many questions about the role of Wilson’s mission-driven organization, SOLVE FSHD.
In our recent webinar (see video above) with Eva Chin, PhD, Executive Director of SOLVE FSHD, she shared why the organization’s ’s important mission is so critical. Dr. Chin says that SOLVE FSHD plans to invest in early-stage companies to ensure a robust pipeline of novel therapies going into clinical trials. The company is supporting natural history studies such as MOVE and MOVE+, which are the bedrock of clinical trials (see “FSHD Canada Foundation awards $2.8 million to CTRN”). Support for such preclinical tools improves the likelihood of novel therapies succeeding in clinical trials.
The $100 million USD commitment, by Wilson that will serve SOLVE FSHD’s mission over the next five years will complement and build upon existing efforts by those already working in FSHD research studies, including the FSHD Society, Friends of FSH Research, FSHD Canada Foundation, FSHD Global Research Foundation, and other nonprofit groups. ”SOLVE FSHD is investing in projects that will grow the number of candidate therapies that make it to clinical trials and get a pipeline built to get more patients into clinical trials and into open label extensions [programs to provide experimental therapies to patients] while waiting for market [FDA] approval,” Chin says. She emphasizes, the solution lies in all of the stakeholders working together.
“Teamwork is the key,” agrees Mark Stone, President and CEO of the FSHD Society. “We are excited to welcome Solve FSHD to this global effort to get more and better treatments to our families faster.”