This month's guest for our "Hot Off the Press" episode is June Kinoshita, Senior Director of Research and Patient Education at the FSHD Society. She will be talking to us about our True Cost of FSHD survey. This survey will be the first of it's kind in the U.S. and is aimed at discovering the financial burdens families with FSHD face due to their illness.  The finding will influence government and private insurance policies that will affect whether you, as an individual living with FSHD, will have access to affordable treatments. 



This may be one of the most urgent and impactful surveys we have ever done. We will be recruiting for this survey June 18-July 16, 2022. Tune in to learn more!