Oct
1
Webinar: COVID-19 Response Survey report
1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. Leann Lewis, MSGC Katy Eichinger, DPT This past spring, the FSHD Society and FSHD UK distributed a survey from the University of Rochester to assess how the neuromuscular patient community was responding to the social distancing policies imposed by the COVID-19 pandemic. We are so grateful to the hundreds of you who responded. The key investigators, Leann Lewis and Katy Eichinger, will present their findings…
Find out more »Virtual Meeting with FSHD Families and Friends in North/South Dakota and Western Minnesota!
Please join us for our very first (virtual) gathering of local FSHD families and friends in North/South Dakota and Western Minnesota! While COVID-19 has prevented us from meeting in person over the summer, we have decided to meet virtually over zoom to get to know one-another in hopes that one day soon we are able to meet in person. When: Saturday October 3rd, 11a-12p Central Time Where: From the comfort of your own home, virtually via zoom (link below) Hosted…
Find out more »Wellness Hour (Virtual Meeting)
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please sign up…
Find out more »Webinar – Accelerating Therapy Development: The Patient Community Role
This month's webinar presenter is Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics. Molly brings a unique perspective on the impact of the FSHD community's role in therapy development. She previously served as chief executive officer of Myotonic, an organization dedicated to advancing research and enhancing the quality of life of people living with myotonic dystrophy. In that role, she led strategic direction and administrative oversight for the comprehensive programmatic and fundraising efforts of the foundation and…
Find out more »Nov
9
Wellness Hour (Virtual Meeting)
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please sign up…
Find out more »Webinar – The Utah FSHD Study
Russell Butterfield, MD PhD This month's webinar shines a spotlight on an ambitious FSHD genetic study led by Russell Butterfield, MD, PhD and Bob Weiss, PhD of the University of Utah. One of the landmark studies in FSHD involved a 1950 publication involving more than 1200 members of an extended Utah family affected by FSH muscular dystrophy and traced back to a pioneer founder born in 1775. Dr. Butterfield will introduce us to this important FSHD family and the work…
Find out more »Dec
14
Wellness Hour (Virtual Meeting)
This is our monthly Zoom meeting on Wellness, held on the second Monday of each month at 5:00-6:00 pm ET (if Monday is a national holiday, the meeting will be held on Tuesday). It is open to everyone in the FSHD community. This is your time to enjoy the company of fellow FSHers, share challenges, talk about what works for you, and feel validated and supported in whatever you may be going through. If you are interested, please sign up…
Find out more »