(top photo: Nancy Serafano w/Maya, Zachary & Brent Woodard, 2nd photo: Taylor Hicks 3rd photo; Audentes Team; John Gray, Ted Slocomb, and Tom Soloway) 

Global Gene's RARE Patient Advocay Summit 2016

A few weeks ago I had the privilege of attending the Global Gene's RARE Patient Advocay Summit for the third year in a row. Global Gene's efforts help catalyze powerful collaboration and continue to share best practices to equip patients, caregivers and advocates with actionable next steps no matter what part of the journey they are facing. My time was spent meeting industry leaders, catching up with Audentes Therapudics executives, as well as Dr. Bloom from Cures Within Reach, and my highlight was visiting with a couple of our MTM families. The Joshua Frase Foundation remains dedicated to its mission of supporting cutting edge research and families affected by this disorder. I also met up with one of Global Gene's performers, Taylor Hicks, American Idol winner, who had autographed a poster for Joshua in 2009. The fight continues for a brighter future for our children

Paul is running in the Seattle Marathon over Thanksgiving weekend. He's running alongside Dr. Martin (Casey) Childers and a team of supporters from the University of Washington. If you would like to support his race, you can go to their crowdrise page and sponsor him there... sponsorship could be per mile, hour, or simply a flat donation. Our goal is $20,000 and we're a quarter of the way there! 

Paul's PSA about the Marathon 
 

Paul Frase remembers his former teammate Dennis Byrd




In an article by the New York Daily Times, Paul had the opportunity to remember his former teammate and longtime friend Dennis Byrd after he was killed in a car accident on Saturday October 15th. Dennis was a longtime donor here at JFF and was passionate about finding our kids a cure. You can click here to read the article. 

2nd Generation International Family Registry for Centronuculear and Myotubular Myopathies


Now in 6 Languages!! Your participation is vital as we continue to understand the true demographics of our community.

   The International Family Registry for Centronuclear and Myotubular Myopathies is releasing its next generation. We are now collaborating with the NIH/NCATS GRDR Program, the Global Rare Disease Registry, Alan Beggs PhD and Casie Genetti, MS, CGC Research Coordinator/Genetic Counselor for Beggs' lab.

Always for the Children,
The Joshua Frase Foundation