5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we'll be discussing breathing issues, which affect many in our community. We'll be joined by Dan Wilson RRT, CPFT, AE-C, a respiratory therapist with the Indiana Joint Asthma Coalition (InJAC). Dan has FSHD himself. Also joining us is... Read More »
Tuesday, April 12th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »
Tuesday, April 19th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Kathy Mathews, Shelley Mockler, and Krista Kohl. Around 70-80 percent of individuals diagnosed with facioscapulohumeral muscular dystrophy report that pain is a significant part of their condition. There has been relatively little research or discussion in the medical literature about the... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Join us this month to share stories about activities you and your loved ones with FSHD once enjoyed but find increasingly difficult - or impossible - to continue. It's okay to mourn. How do we overcome such losses? Have you discovered... Read More »
Thursday, April 28th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Warmer weather will soon be here!! Many in the WOW group have talked excitedly of travel plans. With travel comes a couple of high-level concerns for those of us with neuromuscular diseases. The challenges of... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Access to genetic testing for FSHD has long been a problem in our field. Many doctors find it challenging to order the test because it is complicated and offered by only a few laboratories. Patients and families face obstacles in finding... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Self-compassion is simply about treating ourselves in difficult times with the same kindness and compassion that we would treat a good friend who is struggling. We already know how to do this when it comes to other people. However, making... Read More »
Tuesday, May 10th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »
3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT Get to know your fellow GenZers at this social gathering! This month, Russ Caratenuto, currently a medical student, will talk about his path into medicine, including some of his own research, and then explain some of the up and coming drug... Read More »
Tuesday, May 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
Join Drs. Johanna Hamel, Kate Eichinger, and Natalie Katz to learn about the largest natural history ever done for FSH muscular dystrophy. People of all ages can participate, and children and teenagers are especially needed. Find out why this study is so important and why you and your affected family members' involvement will have a... Read More »
Thursday, May 26th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, one of our members, a wheelchair user, will share of her adventures and challenges during a month-long solo trip driving her van from the Upper Mid-west to Florida. This is our mutual support... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, June Kinoshita, director of research and patient education for the FSHD Society, will answer your burning questions about FSHD...or try to. If she doesn't know, she will be mingling with the world experts later this week at the... Read More »
Saturday, June 18 - Special FSHD Connect edition 9:00 AM ET | 8:00 AM CT | 7:00 AM MT | 6:00 AM PT This month we are meeting live with the Early-Onset Families Unite! breakout session at the FSHD Connect conference in Orlando. Join us via Zoom with us as we discuss strategies for activating... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT How can you enjoy a real vacation when you're caught up with concerns about caring for your loved one. It takes a huge amount of planning and anticipating contingencies to travel at all. How do you regain that sense of freedom... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do we know it’s time for an assistive device , or to switch from walker/cane to a motorized scooter or power chair? Also knowing it doesn’t... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT FSHD is a familial condition, and yet family members can hold different attitudes about how open to be about their diagnosis and how much they are willing to discuss it amongst themselves. Have you wanted to discuss genetic testing or... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT The FSHD Society is conducting a new survey-based study called “The True Cost of FSHD” and is putting out a call to the FSHD community to participate. This is one of the most important and urgent surveys we have ever done.... Read More »
Tuesday, July 19th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
Team Captain Happy Hour! Thursday, July 21st 4pm PT | 5pm MT | 6pm CT | 7pm ET Ending FSHD will take all of us and that’s why the Walk & Roll to Cure FSHD is so important. It’s why team captains matter so much. When you team up with friends, family, and co-workers to... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical... Read More »
Thursday, July 28th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do we know it’s time for an assistive device , or to switch from walker/cane to a motorized scooter or power chair? Also knowing it doesn’t... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we continue our discussions about transitioning to assistive devices, looking closer at how insurance impacts this need and looking at building community within our group. This is our mutual support and social group... Read More »
3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT This month, we'll be talking about fundraising! Maybe this sounds intimidating, but learning how to get your story out there and build a team of friends, family, and other supporters to raise donations is incredibly empowering. Get to know your fellow... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we'd like to have some fun and give our growing group a chance to get to connect with one another on a deeper level. We'll start by asking everyone to use the Chat window to share three things... Read More »
Tuesday, August 9th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »
Tuesday, August 16th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Kent Drescher, PhD Dealing with life’s slings and arrows alongside FSHD may feel like a lot, too much at times, for a person to deal with. Mental health researchers have long focused on factors that increase a person’s risk of developing... Read More »
Thursday, August 25th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our Hot off the Press guest this month is Beth Johnston, FSHD Society's Chief Community Engagement Officer. She will be speaking all about the 2022 Walk & Roll to Cure FSHD - what it is, how you... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT We're going to cover two topics this month. The first topic is "Have you purchased equipment to help with your FSHD partner's activity? Like lifts, power wheelchairs, braces, hearing aids, vehicles, ramps installed for access in your house, staircase lifts? Was... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month is all about self-care. Donna Russo will lead a session on chair yoga, and Ranae Beeker and Ora Prilleltensky will discuss the practice of mindful self-compassion--showing yourself the same compassion you extend to... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand any... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will be discussing how to talk about an FSHD diagnosis with family members who may be at risk, particularly children. When do we tell them, if ever? How do we tell them? What can go wrong? We... Read More »
Tuesday, September 13th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Mark Tarnopolsky, MD PhD Join us for a talk by Mark Tarnopolsky, MD PhD, Professor of Pediatrics and Medicine and Director of Neuromuscular and Neurometabolic Clinic at McMaster University Medical Center in Hamilton, Ontario, Canada. Dr. Tarnopolsky is also CEO and... Read More »
Tim Hollenback, FSHD Radio host Tune in to the 3rd Annual Walk & Roll Livestream Celebration on Facebook@FSHDSociety Saturday, September 17, 2022 9:30am-12:30pm Eastern | 6:30-9:30am Pacific LIVE on our Facebook page @FSHDSociety FSHD Radio podcast host, Tim Hollenback, will host a 3-hour, coast to coast party @FSHDSociety. Walkers and Rollers will check in live... Read More »
Tuesday, September 20th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Our meeting on Sept. 8 focused on techniques to strengthen the abs and breathing. We hope you've had to practice on your own. Today's meeting will give everyone a chance to share what they have done, note any issues... Read More »
Thursday, September 22nd 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Our topic this month is "Talking about FSHD with family and friends." Sharing a diagnosis when first given, planning for family, and planning ahead for care as we age. This monthly meeting is for those of you who are providing care... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we will have a physical therapist who specializes in pelvic floor relaxation concerns, such as incontinence, come and speak with us. Katie Dougherty, PT,DPT has graciously offered to donate her time and expertise... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, join us for a discussion on coping with the changes brought about by FSHD in various aspects of your life. What have been or still are your greatest challenges? Share the life hacks you use to deal with... Read More »
Tuesday, October 11th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand any... Read More »
Tuesday, October 18th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Join Drs. Michael Cole, Kathy Mathews, Christopher Cooper, and Eyad Hanna, of the University of Iowa as they discuss a new study regarding the frequency of gastrointestinal and urological symptoms in FSHD, as well as their impact on quality of... Read More »
10:00-3:00 PM Mountain Time The FSHD Society, in collaboration with our Utah and Idaho chapters and the University of Utah, is hosting this year’s Utah FSHD 360 conference. The University of Utah is one of the first FSHD research centers in the U.S., and played a critical role in discovering and studying a large Utah... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with FSHD. We'll be sharing our concerns about our families' future needs as well as solutions and ideas that have helped. This virtual meeting is a... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT For people living with FSHD who are interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. Eastern Time. Come dressed for exercise and have on hand any... Read More »
Thursday, October 27th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society,... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's topic is Self-Compassion, with an emphasis on providing support for the many of us who are single, without family in our areas, and being alone during any holiday. Ora Prilleltensky or a colleague... Read More »
Tuesday, November 8th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In the November “Feeling Fit” sessions, Frank Hanley will introduce a variety of neck and shoulder exercises and review the qigong breathing techniques and abdominal (core) exercises that he presented in the September sessions. Frank Hanley is a martial... Read More »
9:00 AM - 4:05 PM Central Time The FSHD Society, in collaboration with our Kansas chapter and the University of Kansas Medical Center, is hosting this year’s Kansas City FSHD 360 conference. The University of Kansas is the epicenter of FSHD research in the U.S. in its role as the coordinating center for the international... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT As the weather gets colder (at least in the northern hemisphere), we turn to a subject that is the bane of many person with FSHD: keeping warm. Not to mention those unfortunate hazards of freezing weather, snow and ice. Loss... Read More »
Tuesday, November 15th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
Thursday, November 17th On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Jeffrey Statland, MD This is an unprecedented time for FSHD therapy development. Fulcrum Therapeutics is recruiting for its Phase 3 clinical trial of losmapimod. Dyne Therapeutics and Avidity Biosciences are among several companies that are on the verge of launching... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In the November “Feeling Fit” sessions, Frank Hanley will introduce a variety of neck and shoulder exercises and review the qigong breathing techniques and abdominal (core) exercises that he presented in the September sessions. Did you try these exercises... Read More »
Tim Hollenback, FSHD Radio host #GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. On Tuesday, November 29th, we will celebrate with an all-day Radiothon event via Facebook Live! FSHD Radio host, Tim Hollenback, will host guests non-stop from 11am-8pm Eastern/8am-5pm Pacific on Facebook@FSHDSociety.... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Our topic this month: How do we decide when/if we need outside help either part time or live-in? It's a big step and not everyone in the family be on the same page. Are you approaching this decision point or in... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we'll be talking about "mattering," feeling valued as a woman, while living with the challenges of FSHD. We will also discuss depression, the potential high prevalence in individuals with chronic diseases -identifying signs and symptoms,... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT “FSHD is always attacking me… it never takes a day off. I practice qigong and kung fu daily. It’s my way to fight back.” -FH In the December “Feeling Fit” sessions, Frank Hanley will introduce several qigong exercises to... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, you're invited to come dressed in Zoom-worthy holiday apparel, with favorite seasonal libations in hand! The Wellness Hour is open to everyone in the FSHD community. We'll have an open-ended conversation about how group members would like to... Read More »
Tuesday, December 13th Join us for the last FSHD Radio Show of 2022! For this special episode, join Tim and FSHD Society's CEO, Mark Stone as they discuss all that has happened in the FSHD community this past year. Mark will be sharing exciting updates that have happened in FSHD research and development in 2022,... Read More »
1:00 pm ET | noon CT | 11:00 am MT | 10:00 am PT | 18:00 GMT | 19:00 CET Everyone in the FSHD world has a role to play in getting our community to be "trial ready." The FSHD Society's website is your portal to trial readiness. Many of you may not realize the... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In the December “Feeling Fit” sessions, Frank Hanley will introduce several qigong exercises to help strengthen the immune system and improve qi flow. These exercises build on the abdominal breathing exercises that Frank introduced in September, and reviewed during... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT 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 care partners (the term we... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will continue the conversation that we started last month on depression. We'll also use this time to assess our group and what we'd like to accomplish in 2023. This is our mutual support and... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Have you experienced pain as part of your FSHD? What has helped? What are your continuing challenges? Are you familiar with multidisciplinary approaches to managing pain? This month's conversation is an opportunity to seek and share advice on pain management.... Read More »
Tuesday, January 10th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. To kick off the new season, we turn the tables... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Lonwabo Nene Join us this month as Lonwabo Nene explains his physical rehab journey and how certain movements - when targeted at problem areas - have had a positive net effect in helping him manage his muscular dystrophy. Lonwabo is... Read More »
Tuesday, January 17th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as... Read More »
Thursday, January 26th On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Lonwabo Nene Join us for Q&A and discussion to follow up on Lonwabo Nene's physical rehab journey. Lonwabo is an active member within the disability awareness sector. He was diagnosed with FSHD at the young age of 15 and... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT What does your partner need from you or someone who helps with their care? This came up a few months ago, as we talked about how to decide when one needs professional help for their partner. This conversation leads to how... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Let’s learn from each other by sharing great tricks for shopping for clothing, getting makeup on, selecting shoes, how to do our hair, finding shoes that we want to …and can wear, And MORE! Please... Read More »
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join physiotherapist Ulrike Uta of the Muscular Dystrophy Support Centre (MD Support Centre) in Coventry, UK, for today's session. Posture changes are normal for people living with FSHD. They are caused... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will be joined by crisis counselors Kylee Helmke and Andrea Morales to discuss mental health issues that affect the FSHD community. Depression is not uncommon, and too many families have been devastated by suicide. This is a... Read More »
Tuesday, February 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. This month’s guest is Paul Ronson of Suffolk, England, a radio... Read More »
Learn about the FDA's recent fast track designation for Avidity's FSHD therapeutic here. 1:00 pm ET | noon CT | 11:00 am MT | 10:00 am PT | 18:00 GMT | 19:00 CET Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial in FSHD of the novel compound... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. We will... Read More »
Thursday, February 23rd On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things FSHD.... Read More »
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Ulrike Uta will join us to discuss the experiences of the February 9 exercise class and answering questions. We can revisit some exercises to discuss in more detail. We all move... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT | 18:00 UK | 19:00 CET Dr. Rita Perlingeiro Our webinar speaker is Dr. Rita Perlingeiro, Associate Professor of Medicine within the Lillehei Heart Institute at the University of Minnesota. Her primary research interests include understanding the molecular mechanisms controlling... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Our topic this month is continuing last month's talk about How do we take care of ourselves? How do we get outside help for our partner when needed? This monthly meeting is for those of you who are providing care to... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT 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 care partners (the term we... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will continue our conversations about Challenges (and over coming them!) with Shoes, Dressing, Makeup, Hair and Appearance specifics. Yielding-Feeling good about our appearance. This is our mutual support and social group for women... Read More »
18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT “FSHD is always attacking me… it never takes a day off. I practice qigong and kung fu daily. It’s my way to fight back.” - Frank Hanley Frank Hanley returns to lead... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we will discuss a film, I Didn’t See You There. The idea is for you to watch it ahead of time and then join us on Zoom for the discussion. But if you don't have time to see... Read More »
Tuesday, March 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. This month, our Community Profiles guest is entrepreneur and philanthropist... Read More »
7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re just graduating, starting a... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. We will... Read More »
