Written by Beth Johnston, Development Officer at the FSH Society
When my husband, Jeff, was diagnosed with FSHD in 2001 (after years of wondering what was going on with his body), we couldn’t pronounce the disease, let alone understand what it all meant for our family. I discovered the FSH Society several years later (thank goodness) after moving from Denver to New York – and began the journey of discovery and hope.
Fast forward 16 years, 2 kids later, and we are back in Denver. One thing that has kept me hopeful and sane during these years is the camaraderie of patients and their families and friends – all working together to raise funds, raise awareness, and share helpful information with one another.
Knowing this, upon moving back to the Denver-area, I knew it was critical to have that same companionship for the patients and people who love them. Our “Denver FSHer” group has been active and growing for just over 3 years now. All of us are at different stages of progression, both physically and mentally, but we all share this disease somehow.
The past few years have been remarkable for the advancements in treatments, clinical trials, and patient support! When my family first started this journey in 2001, there were no companies with FSHD programs. There are now more than a dozen companies with FSHD-specific programs! As well, we now also have nearly 20 patient meeting sites around the U.S. – and that number continues to grow.
We are so very lucky to have two distinguished guests join us for our upcoming Denver-area patient meeting on March 25th, 2017 – Dr. Jeff Statland from the University of Kansas Medical Center, and Dr. Matthew Wicklund from the Neuromuscular Center at the University of Colorado Hospital. Both doctors share interests specific to FSHD, and Dr. Statland’s clinic is currently conducting clinical trials for patients of FSHD. Dr. Statland will be discussing FSHD clinical trials and recent genetic updates (and how that might affect treatments for you!). Dr. Wicklund will be discussing FSHD in the context of other genetic, muscular diseases and upcoming changes to the University of Colorado Neuromuscular Division. Both doctors will be able to give valuable insights into FSHD both as physicians and as researchers.
Please join us if you are able! Space is limited, so please reserve your spot well in advance!
RSVP to Robyn O’Leary at robyn.oleary@fshdsociety.org or 781-301-6042.
Lunch will be provided.
Saturday, March 25, 2017, 12:30 pm – 3:30 pm MT
Eloise May Library: May Meeting Room A
1471 S. Parker Rd – Denver, CO
If you cannot attend in person but would like to remotely: Join from PC, Mac, Linux, iOS or Android: https://zoom.us/j/3648329628 Or by telephone, dial: (646) 558 8656, Meeting ID: 364 832 9628.
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