Events Search and Views Navigation
List of Events
FSHD Society Radio with Molly White from Dyne Therapeutics
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guest this week is Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics. In our webinar last week, White discussed her perspective on the impact of the FSHD community’s role in therapy development. This is your chance to ask any questions you may have. White previously served as chief executive officer of Myotonic,…
Find out more »The 5th Annual UPIN FAMILY CONFERENCE PROGRAM
The FSHD Society is happy to support the 5th Annual UPIN FAMILY CONFERENCE PROGRAM Since 2015, the Utah Program for Inherited Neuromuscular Disorders (UPIN) has hosted an annual conference to bring together leading researchers, clinicians, and families living with neuromuscular disorders. This year the event will be VIRTUAL! UPIN sees this as an opportunity for innovative and creative programming, opening pathways to diverse connections within the Neuromuscular community that transcend the confines of space. This year’s virtual conference will be…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »FSHD Society Radio on fitness and exercise
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guests tonight are Mitch Wade and Bill Hertzberg, our fitness gurus. They'll be demonstrating some of the workouts that have helped Bill with his FSHD symptoms and answer your questions. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It’s a great community event!…
Find out more »FSHD Society Radio with civil liberties lawyer Ed Barocas
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Our guest tonight is Eddie Barocas, an extraordinary champion for underdogs, who until recently served as Legal Director of the American Civil Liberties Union of New Jersey. You can read more about him on our blog. He will talk about his amazing life and how FSHD may have helped make him who he is. Mark your…
Find out more »CANCELLED: November Connecticut Connections: See you in December!
Kathy Senecal and Sarah Pashe invite you to come support, empower, share and network with the FSHD community. This is a monthly meeting that will take place on the first Thursday of each month via Zoom web conference. Patients, caregivers and family members welcome! JOIN US from your computer or tablet! If needed, passcode is: CTConnect Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org
Find out more »Kansas City FSHD Family Day
Virtual FSHD FAMILY DAY Join KUMC & the FSHD Society for our virtual FSHD Family Day event this November. This event is for patients and family members to connect and learn more about advances in FSHD research. November 7th at 9:00am - 2:00pm CST You can follow the FSHD Clinical Trail Research Network on Facebook for event updates and all things FSHD research: https://www.facebook.com/FSHDCTRN Because it is virtual, we welcome anyone from anywhere to join us. Contact Grace with any…
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 register by…
Find out more »FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It’s a great community event! Whether you just need someone to talk to, are trying to solve a problem, or have ideas to share, we welcome your voice. You can call Tim at 414-375-2561 or post questions and…
Find out more »Colorado Virtual Chapter Meeting
Saturday November 14th, 11:00 am - 1:00 pm MT Virtual Zoom meeting: https://ucdenver.zoom.us/j/93149824739 Please mark your calendars to join us for our next support group meeting where we will discuss together the emotional and relational challenges of living with FSHD. In July we had the opportunity to hear from licensed social worker Mary O’Hara about how our relationships change as we and our loved ones adapt to the progression of FSHD and how our surface behaviors may actually reflect complicated…
Find out more »New England Chapter Meeting
November 15, 12:00PM ET Hey, New Englanders! It’s been a while since we’ve been able to see each other, and we miss you! We know there are some new folks out there as well that we want to welcome into our community. Until we can get together in-person again, we’d love for you to join us for a little getting-to-know-each-other social hour over Zoom! Mark your calendars for 12-1pm on Nov. 15th (don’t worry, it’s an 8-o’clock Pats game). On…
Find out more »FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It’s a great community event! Whether you just need someone to talk to, are trying to solve a problem, or have ideas to share, we welcome your voice. You can call Tim at 414-375-2561 or post questions and…
Find out more »
Webinar – The Utah FSHD Study
Russell Butterfield, MD PhD November 19th, 2020: 1:00PM ET 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…
Find out more »NYC Virtual Chapter Meeting
Saturday November 21st, 12p-1p ET Join Zoom Meeting from your computer or tablet: https://us02web.zoom.us/j/89829813766?pwd=MTNkYlFIdHgxSGRUVnpENHJFZkhpdz09 Meeting ID: 898 2981 3766, Passcode: FSHD Or by phone 646-558-8656, Meeting ID: 898 2981 3766 We are long overdue for a gathering! While COVID-19 may keep us from getting together in person, we can still gather virtually. Join your fellow NYC and surrounding area FSHD-ers for a virtual meeting on November 21st at 12 noon ET. A time to reconnect, meet new members, and…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »FSHD Society Radio
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live every Wednesday evening. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. It’s a great community event! Whether you just need someone to talk to, are trying to solve a problem, or have ideas to share, we welcome your voice. You can call Tim at 414-375-2561 or post questions and…
Find out more »FSHD Society Radio
Tim Hollenback, FSHD Radio host 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Join host Tim Hollenback on Facebook Live on the first Wednesday evening every month. During the hour-long program, you'll get to meet fascinating guests discussing a wide range of topics of interest to our community. Mark your calendar. Invite your friends to a listening party and chat with fellow Facebook listeners in the comments section. Call Tim with your questions…
Find out more »FSHD Connecticut Connections
Kathy Senecal and Sarah Pashe invite you to come support, empower, share and network with the FSHD community. This is a monthly meeting that will take place on the first Thursday of each month via Zoom web conference. Patients, caregivers and family members welcome! JOIN US from your computer or tablet! If needed, passcode is: CTConnect Or iPhone one-tap : +16699006833,,442453571# Or by Telephone: 669-900-6833, Meeting ID: 442 453 571 RSVP to Kathy at CTChapter@fshdsociety.org
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 register by…
Find out more »Webinar – Bracing for spine and knee issues
Webinar sponsored by Allard This month's webinar addresses two frequently mentioned topics for the FSHD Community: knee hyperextension and spinal issues such as lordosis that result from the weakening of core muscles. Orthotic braces and supports can provide solutions for some individuals. Our speaker is Bob Meier (ABC CO #3818). Bob has been active in the fields of orthotics, therapeutic exercise and biomechanics since 1978, and has been conducting education programs since 1982. His special interest is in applied closed chain…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Western PA Drum & Roll
Please mark your calendars: The 2021 Western PA Drum & Roll to Cure FSHD has been scheduled! We hope to see you on Sunday, April 18, 2021 Please reach out to the Chapter Director, Mark Christman, with any questions! He can be reached at WesternPAChapter@fshdsociety.org We look forward to seeing you on the 18th!
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »Caregiver / Sharegiver Hour
8:00 - 9:00 PM ET This monthly meeting is for those of you who are providing care to loved ones with FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other caregivers. Please respect our rules restricting this meeting to caregivers (or "sharegivers," as Isaac Prilleltensky has proposed, because providing care to loved ones is a two-way street). Because we don't want to publicly post the Zoom meeting link (to…
Find out more »