What's Next?
 

The University of Rochester will be hosting a Patient Day 
Saturday, May 2, 2020
University of Rochester - Sarah Flaum Atrium
 

Speakers will include ReSolve FSHD study doctors such as Dr. Kathryn Wagner, Dr. Leo Wang, Dr. Jeffrey Statland, and Dr. Rabi Tawil. They will talk about upcoming clinical trials and more!
 

If you are interested in registering for this free event, please contact:

Karen Lee at karen_lee@urmc.rochester.edu

The Patient Perspective
(A note from one of our subjects)
 

All of us afflicted with FSHD are constantly wondering what we can do to contribute to the research which is so close to finding a cure. Yes, we donate our money in respectable amounts. But what about also donating our time to the teams of researchers who are so diligently and tirelessly working to help us?

After searching on clinicaltrials.gov, I found the ReSolve study and frankly it seemed pretty easy. All I had to do is show up at the right time and the right place and have a series of exams. Still the first day, not knowing what exactly to expect I was a bit nervous. I thought it would be like a typical trip to the hospital, very impersonal, lots of waiting and paperwork to fill out and maybe some surprise, painful test they’d spring on me at the last minute. I couldn’t have been more wrong. The staff are warm, caring, and honestly appreciative. Best of all no surprises tests. They did what exactly they said they would and had me in and out in a matter of hours which I was appreciative since I still hold a job. Over the course of the 18 months I began to feel like I was part of the ReSolve team and was actually disappointed knowing I wouldn’t see them again after the last visit.

I know everything we do is a struggle but I highly recommend you put out the effort for ReSolve, you’ll be participating in finding the cure but you’ll also find new friends.

ReSolve FSHD Site Contacts