Leap Year Summit

Leap Year Summit Agenda
Research Summit on the Leap Year in Portland 2016

Community driven research advances are quite profound when you think about it. Saturday January 23 marked our 12th annual FiSHing for a Cure Auction and Gala, which raised over $230,000 for research towards a treatment or cure for FSHD. There were two ways this could have turned out: we could have learned absolutely nothing over the last 12 years, or we could have made instrumental advances that put us on a clear path towards the clinic. We are grateful that with your support and the support of a brilliant and vibrant research community we've been able to go the latter path.

And then came 2016. What does FSHD look like in 2016? What are we are we going? How are we going to steer our research investments towards a clear path the clinic? Our goal is to ultimately take basic research discoveries, and move toward studies developing therapeutics and see those treatments make it to FSHD patients to improve their lives.

That is why we are doing something bold.  This leap year, on February 29th and March 1st, we will assemble the key academics in our field, industry leaders and drug regulators to discuss how we are going to champion the movement forward. We are going to learn a lot in two days of very intensive discussion and workshops designed around the key therapeutic strategies for FSHD. Each member at that meeting is the best, and consequently will be learning from the best.

We will walk away from the meeting reinvigorated for the work ahead and gain some important partners on the road to a cure. Stay tuned for the exciting results in 2016!