9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT
On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things FSHD.
This month’s guest for our “Hot Off the Press” episode is June Kinoshita, Senior Director of Research and Patient Education. 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. Tune in to learn more!
Watch the video podcast premiere on the 4th Thursday of every month, either on YouTube or Facebook. Share your thoughts, or post questions in the comments section. You can also access the podcast on any streaming service within a few days of the video premiere.
Mark your calendar and invite your friends to a listening party! Chat with fellow viewers in the comments section. It’s a great community event! Whether you just need someone to talk to, are trying to solve a problem, or have ideas to share, we welcome your voice.