Tag Archives: Patient Connect

Picture of Trisha Sprayberry

My Boston Adventure: traveling solo with my wheelchair

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.

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What Would You Like to #AskTheResearcher?


For the past 25 years, countless researchers have dedicated their time and energy striving to find a cure for FSHD. Thanks to the work of researchers like Dr. Jeffrey Statland, Dr. Rabi Tawil and Peter Jones, PhD (just to name a few!), we are a strong community filled with some of the brightest minds in science.

At this year’s Patient Connect Conference on November 11, we want to open the floor for you to ask researchers your questions. Do you want to know what they’re working on? What the next big breakthrough may be? Now is your chance. Please send your questions to Beth.Johnston@fshsociety.org, or share them on Twitter, Facebook and Instagram by using the hashtag #AskTheResearcher – – no later than November 8th!

We’ll present your questions to the researchers during the Q&A session at the Patient Connect Conference. We’ll also be sharing the questions and answers on the FSH Society website and our social media channels after the event.