Written by Trisha Lynn Sprayberry
Las Vegas, Nevada
My adventure began late Wednesday night, November 9, 2016. My fiancé, Erin, had dropped me off at the airport. With my suitcase in hand and a kiss to send me on my way, I was headed to Boston on a red-eye flight. I was attending my first patient conference, hosted by the FSH Society, and their inaugural #CureFSHD gala. It was at the grand Westin Copley Place Hotel in Boston, Massachusetts.
On Sunday, October 30th, Griff Entertainment will provide the first-ever livestream for the FSH Society’s second annual Ghostly Gala to Vanish FSHD. The gala will be held at the Cicada Club located at 617 Olive Street in downtown Los Angeles, beginning at 5:00 p.m. and ending at 10:00 p.m. Guests who cannot attend the actual gala will now be able to livestream it via www.fshlive.org. Viewers will be able to make online donations to the FSH Society.
“This is our 21st century answer to the Jerry Lewis telethon,” said Executive Director June Kinoshita. “People from around the world can log in, enjoy the show, learn about how important it is to support research for treatments and a cure, and contribute to the cause.” Continue reading