Dear Mid-Atlantic Friends of the FSH Society:
As you probably know, there are very promising developments in FSHD research, including several that focus on potential therapeutic agents in the not-so-distant future. After seeing this video from the Society’s recent conference in Las Vegas (https://www.youtube.com/watch?v=yZJKOntIU10), I am certain you will agree that we need to do everything possible to advance this work.
That is why we launched our Mid-Atlantic Chapter, with an excellent meeting on Sunday, August 4th. We are committed to help expedite treatments for FSHD.
And we are off to a great start. We will be holding a Blue Grass concert-fundraiser in Frederick, Maryland, in the February/March timetable, with an exciting young band. We will soon send you the exact date and other details so that you can put it in your calendar. We hope you will attend and bring many others with you. It’s not too early to start thinking about family and friends you can invite to this event.
We are also looking into a location for a Walk & Roll event in 2019, as well as educational activities. In fact, our first educational event will be the FSH Society Mid-Atlantic FSHD Family Day Conference, to be held in Baltimore, MD, co-organized with Kathryn Wagner, MD PhD, and her team at the Kennedy-Krieger Institute. This meeting will update you on research ongoing at KKI as well as from other leading FSHD centers (https://www.fshsociety.org/2018/08/mid-atlantic-fshd-family-day-registration-is-open/); and you will also have a chance to hear more about our chapter plans.
Needless to say, we welcome more volunteers to join our chapter, and also suggestions you may have to advance our work in fund-raising and education. Please feel free to contact me by email or phone (202-262-3981).
Manuel R. Gomez, DrPH, MS
Mid-Atlantic Chapter Chair
To contact us directly, please email: MidAtlanticChapter@fshsociety.org.
Visit the FSH Society Events calendar to search for upcoming events in your area!
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