Our look is new. Our purpose is the same. Learn more about our brand evolution.
Alberta Chapter Virtual Meeting All Canadian FSHD Community Members Welcome Wednesday, October 2, 2024 7:00pm - 8:00pm MT RSVP: https://go.fshdsociety.org/l/701273/2023-01-17/42q91r Following the disappointing news from Fulcrum, Neil Camarta will be presenting slides indicating how much is going on regarding FSHD treatments & muscle regeneration (especially here in Canada), letting people know that there are still […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT UPDATE: We have reschedule for October 9 due to Rosh Hashanah falling on October 2 this year. After a move or new environment, we have to adjust to a new environment, including costs for personal […]
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 Trish Kean for a session of Shaking Qigong. Shaking helps us to open up our joints or energy gates and meridians allowing the free flow of Qi (energy) in our body. […]
Virginia Chapter Monthly Virtual Meeting Tuesday, September 24th, 6:00pm ET Please join us for this casual, conversational monthly meeting. We look forward to catching up with everyone, sharing our updates and adventures, AND talking about our upcoming Walk & Roll to Cure FSHD on October 12th! Please RSVP using the button below to receive the […]
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 […]
2024 International Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Mitch Wade, a fitness trainer from Portland, Oregon, is a legend in the FSHD community for his understanding of FSHD and results he has achieved with clients to help restore strength, range of motion, and function. No one can reverse […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Christina's World, by Andrew Wyeth Living with FSHD can stir complex emotions that are not easy to bring to the surface or articulate. Zee Zelinski, who was diagnosed with the condition as a young child, explores her world through art, […]
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 Chris Haven Chris Haven, from the Pacific Northwest chapter, will share her experiences working out with Alex Walker, a personal trainer and strength coach. She will share a video and discuss her […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our speaker this month addresses an important topic that affects many in our community. Elizabeth Pendo is the Kellye Y. Testy Professor of Law and Senior Associate Dean for Academic Affairs at the University of Washington School of Law, and […]
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 talk about the challenges of making and keeping friends, in light of our many mobility challenges and potential location changes AND how to cope with the jealousy that may creep up […]
Western PA Chapter Drum & Roll Prep Virtual Meeting Thursday, August 29, 2024 7:00-8:30pm ET RSVP here: go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting for a discussion on how we can make the 2024 Drum and Roll our best one yet! Learn how to navigate the Drum & Roll website and use it to up your fundraising […]
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 […]
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 Jhana Wilson, PT Physical therapy and exercise are important if you have FSHD, but making regular trips to a physical therapist can be challenging if you have mobility or transportation challenges. Join […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Using real FSHD patient food records, we will explore the journey to better nutrition for FSHD and discuss the dietary choices that we make each day. Selina Lai, our Pacific Northwest Chapter director, has a registered dietitian credential and has […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT We're excited to learn that Avidity will begin recruiting for Cohort C of its clinical trial this fall, and Cohort D sometime in early 2025. So it's timely to learn about how to become "trial ready" at the individual level. […]
Atlanta Chapter Virtual Meeting: Walk & Roll Prep Monday, August 19th, 5:30-6:30pm ET Join our virtual meeting for a group brainstorm and discussion on how we can make the 2024 Walk and Roll our best one yet! Please fill out the RSVP form at the link above to receive the Zoom link for this virtual […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Christina's World, by Andrew Wyeth Living with FSHD can stir complex emotions that are not easy to bring to the surface or articulate. Zee Zelinski, who was diagnosed with the condition as a young child, explores her world through art, […]
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 Physical therapy and fitness training can both be beneficial to individuals with FSHD. Do you know the difference? When is PT called for? When does fitness training make sense? Join us to […]
Los Angeles Virtual Chapter Meeting Wednesday, August 7th | 6:00 - 7:00 pm PT Join us on Wednesday, August 7th from 6:00 pm - 7:00 pm for our upcoming virtual chapter meeting. We are excited to have our chapter come together after a brief hiatus and to share exciting updates about where we are as […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We'll be discussing a variety of topics that have been raised recently: The types of providers we use to take care of our unique needs Managing fatigue How to maintain a sense of humor when […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Team Captain Rally & Social Hour Wednesday, July 31st Join us for our annual Team Captain Rally where we celebrate our amazing Team Captains and Walk Leaders for all of the incredible work that they do. We’ll provide a few tips and tricks for […]
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 […]
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 Our featured presenter, Andrea Jaworek, PT, is passionate about aquatic exercise for people with neuromuscular conditions. Andrea will be presenting on aquatic exercise, discussing the benefits and latest research, the aquatic precautions/contraindications, […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Western PA Virtual Chapter Meeting Wednesday, July 17th, 7:00pm ET We will gather for conversation and to provide each other support. We will also discuss recent FSHD Society updates as well as details for our August picnic. Please RSVP to ensure you receive the […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This year's FSHD Connect, held on June 15-16, had activities and breakouts dedicated to pediatric and early-onset FSHD. Ally Roets and Debbie Eggleston will share what happened, what was learned, and discuss how our community will follow up. Join us […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month, we invite everyone in the Young Adults community to join a conversation about how we build our community. How can this group support you with issues that are priorities in your life? What can we all work on […]
7:00-8:00pm ET | 6:00-7:00pm CT | 5:00-6:00pm MT | 4:00-5:00pm PT Chicago Chapter Virtual Meeting Thursday, July 11, 2024 via Zoom Join us for our upcoming virtual Chicago Chapter Meeting where we have some exciting updates to share. This will include updates from the Connect Conference that took place in June, as well as the […]
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 In PART 3 of the “Feeling Fit” Breathing and Breathwork sessions, Frank Hanley will review and discuss exercises presented in the first two workshops, and demonstrate additional breathwork exercises to improve breathing […]
First Wednesday of every month* 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT *Note we have changed the date to July 10 due to the July 4 holiday. Our July topic will be: How to manage when our assistive devices cannot get us into a building, how to […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's Wellness hour features In Home Preferred, an innovative company run and managed by two Occupational Therapists who are Certified Aging in Place Specialists (CAPS). Hailey Conway, OTR,OTD,MS, CAPS and Sam Koelmel, OTR, OTD, MS, CAPS are the owners […]
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 In PART 2 of the June “Feeling Fit” sessions, Frank Hanley will review and discuss exercises presented in PART 1 and demonstrate additional breathwork exercises to promote nose breathing and help strengthen […]
9:00-10:00pm ET | 8:00-9:00pm CT | 7:00-8:00pm MT | 6:00-7:00pm PT Sacramento Virtual Chapter Meeting Wednesday, July 10, 2024 6:00-7:00pm PT on Zoom Join the Sacramento Chapter for our upcoming virtual meeting. We will have a guest presenter, Christine Arseneault, who will share ways to stay active outdoors with FSHD. Christine is a resident of […]
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 […]
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we […]
7:00m Hello Ontario Friends! Join us virtually to celebrate World FSHD Day on June 20th at 7:00pm! We want to celebrate all the amazing things that are happening in the FSHD Community on this International Day of Awareness for FSHD WHAT: World FSHD Day, June 20th - Virtual Chapter meeting. RSVP HERE to receive the […]
Ontario Chapter: World FSHD Day Virtual Meeting Hello Ontario Friends! We hope you can join us virtually to celebrate World FSHD Day on Thursday, June 20th at 7:00pm ET! Together, we can celebrate all the amazing things that are happening in the FSHD Community on this international day of awareness for FSHD. RSVP via the […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT We are cancelling this month's meeting because we will be very busy with FSHD Connect. Join us next month for Early-Onset Parent Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT We are cancelling our June meeting because the Young Adults group will be recovering from a busy, exciting several days at the FSHD Connect conference in Denver. We will be back next month! FSHD Young Professionals is a social and […]
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 Are you a ‘Mouth Breather’? Do you wake up in the morning with a headache? This month, Frank Hanley returns to discuss the effects of ‘mouth breathing’ and how FSHD can cause […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our guest this month is Diane Corrinne Buck, Gourmet Food Store Owner & Cooking enthusiast. "Having started my interest in food and cooking as a young girl, over the years I have dedicated my free time to recipe development, refining […]
7PM ET | 6PM CT | 5PM MT | 4PM PT Michigan Chapter Virtual Meeting Join us at our next virtual chapter meeting, scheduled for Thursday, June 6th at 7pm ET. No set agenda, this is simply a time for us to gather together and share our updates and adventures. RSVP via the below button […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Texas Community Social Hour Wednesday, June 5, 2024 Join us for a special Texas Social Hour and come catch-up with old friends or make some new. It's been a little over a month since we gathered as a community together for the Texas FSHD […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's conversation topic is "How to keep a meaningful life in retirement or when you need to stop working." Many of us find fulfillment, identify, and a sense of mattering through our work outside […]
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 […]
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we […]
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 This is part two of this month's series with Arielle Levy, a physical therapist who trained with Julie Herschberg (legendary in our community). Arielle will be discussing nerve mobility and pain. Postural impairments […]
7PM ET | 6PM CT | 5PM MT | 4PM PT New England Chapter - Virtual Meeting Please join us for our next virtual chapter meeting, taking place on May 22nd! We will discuss what's new with the FSHD Society, upcoming events on the calendar, as well as share adventures and stories amongst ourselves. Our […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT CHANGE NOTICE: Instead of recapping Hill Day, we welcome our esteemed guest, Heloise Hoffmann. Heloise Hoffmann Our guest is Heloise Hoffmann, who will share insights about coping with the diagnosis of FSHD based on her personal journey from age 13, […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month we'll learn about kratom, a medical herb, from Young Adults group co-moderator Chandler Young. About himself Chandler says "I’m 23 and live in North Carolina, was formally diagnosed with FSHD at 16 but showed symptoms very early in […]
7PM ET | 6PM CT | 5PM MT | 4PM PT Western PA Chapter - Virtual Meeting Please join us on Monday, May 20th at 7:00pm ET for our next virtual chapter meeting. In addition to checking in with everyone, I would like to share my latest experiences at the Abilities Expo and the Day on […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Chaplain Deb Calhoun Many of us procrastinate when it comes to planning for the future, especially when the future could include illness, disability, having to find caregivers, financial uncertainty, or the prospect of having to turn over control of your […]
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 This month we have the pleasure of welcoming Arielle Levy, a physical therapist who trained with Julie Herschberg (legendary in our community). We're eager to meet the next generation of PTs who […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's discussion will focus on promoting a positive outlook. Staying positive can be challenging while one is dealing with uncertainty and experiencing emotional needs of lifestyle changes. How do we cope with the pain […]
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 […]
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 Donna Russo will lead today's session on chair yoga. Donna is a dancer, actress, and activist. She has performed with wheelchair dance troupes and made a series of YouTube videos, Donna on […]
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT When a child has a progressive, disabling condition like FSHD, the transition to adulthood and independent life can be challenge, as much for parents as for the new adult. Sherry Aiken guides many youths (and their families) through this process. […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Dani Liptak If you are experiencing some level of disability from your FSHD symptoms (or other issues, for that matter), what are your rights to accessible public spaces, work environments, education, etc.? Does the law protect you? Dani Liptak, a […]
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 We welcome back Trish Kean, who will lead us through a session of Shaking Qi Gong. Shaking helps us to open up our joints or energy gates and meridians allowing the free […]
9:00pm ET | 8:00pm CT | 7:00pm MT | 6:00pm PT British Columbia and Alberta Chapters - Virtual Meeting When: Wednesday April 10th, 6pm PT | 7pm MT Where: Virtually via Zoom, please RSVP below to receive the Zoom link What: We are excited to have special guest Lena Graham joining us! Lena is a […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, Rick Whitehead will share his experience having surgery to reinforce weak abdominal muscles (the cause of the "pregnant belly" silhouette). We're being tongue in cheek about this being a "tummy tuck," as it's not a cosmetic procedure but […]
9:00am ET | 8:00am CT | 7:00am MT | 6:00am PT NYC/NJ-area Virtual Chapter Meeting Saturday, April 6th, 2024 at 9am ET Dear Friends, Please plan to join us for our next virtual meeting, Saturday, April 6th, 2024 at 9am ET. This is the next in our series of regular bi-monthly meetings to provide […]
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 discussion on what to do when your current care plan isn't working anymore. As always, expect a wealth of practical tips, sympathy, and the supportive company of awesome women. […]
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 As Rita Lynn has had to cancel her yoga session with us, we are happy to welcome Frank Hanley, who will lead us through some Qi Gong exercises. He always comes up […]
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 […]
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT As we plan the 2024 FSHD Connect conference--the largest gathering for patients, families, clinicians, and researchers--we want to provide activities and spaces for kids and teens. Join us to learn more about FSHD Connect and help us brainstorm fun and […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Many of us have tried or are curious about CBD and medical marijuana to treat pain, anxiety, etc. Our featured guests this month, Claire Szabo-Cassella and Lou Cassella, will share their experiences in seeking relief for Claire, who lives with […]
7-8pm ET | 6-7pm CT | 5-6pm MT | 4-5pm PT Texas Virtual Happy Hour, Sunday, March 17, 2024 TIME: 6:00 pm - 7:00 pm CT WHERE: Virtually via Zoom Pour your favorite beverage and come here the great news - FSHD 360 is coming to Texas! Join us for a virtual happy hour where […]
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 Rita Lynn (far right) with her family This month, Rita Lynn will lead sessions on adaptive yoga. Rita will focus on the meditative aspects of yoga during this Zoom session. She also […]
7PM ET | 6PM CT | 5PM MT | 4PM PT New England Chapter - Virtual Meeting Please join us for another great virtual chapter meeting! We will discuss current clinical trials, upcoming events, and formally meet Jenny Gast - our new FSHD Society Regional Director. We will also showcase some great talent from right […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we welcome Isaac and Ora Prilleltensky, who literally wrote the book on How People Matter. Ora is a regular moderator for the Wellness Hour. Her husband Isaac has presented several webinars on mental health and well-being. "Mattering" is […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a presentation on menopause and women with FSHD, from Drs. Thornburg and Mitchell Linder, from the University of Rochester Medical Center, Ob-Gyn department. This is our second presentation from Dr. Thornburg. We […]
7PM ET | 6PM CT | 5PM MT | 4PM PT Michigan Chapter - Virtual Meeting Please join us for a virtual chapter meeting on Tuesday, March 5, 2024, from 7pm - 8pm Eastern. No set agenda, this is simply a time for us to gather together and share our updates and adventures. RSVP via […]
7:00-8:00pm ET | 6:00-7:00pm CST | 5:00-6:00pm MT | 4:00-5:00pm PT Please join us for a virtual chapter meeting on Wednesday, February 28, 2024, from 7:00pm - 8:30pm Eastern. Items we plan to cover include: 1. Meet our new FSHD Society Regional Director - Jenny Gast 2. Updates on what’s happening in the FSHD community […]
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 […]
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we […]
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 We review the hip flexor exercises from two weeks ago. We will be doing exercises on the floor so you may want to use a yoga mat. Frank Hanley will present a […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This month, we'll be sharing news from the FSHD Society's annual Volunteer Leadership Summit in Chicago. Debbie Eggleston and Kristin Zwickau attended in person while Ally Roets beamed herself in via Zoom. They will discuss the progress in pediatric FSHD […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Please join Robert Ro and the Young Adults group for a discussion on Preventative Care & Managing Secondary Complications! Many of us face challenges beyond reach and mobility, or know that we are at greater risk for secondary complications, and […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will discuss Ayurvedic medicine, the ancient Indian system of integrative, holistic medicine. Treatments are personalized and include lifestyle, yogo, diet, and medicinal formulations, mostly plant-based. We will hear from individuals with FSHD who have used Ayurvedic approaches, […]
9:00am ET | 8:00am CT | 7:00am MT | 6:00am PT Join us for a virtual meeting! Saturday, February 10th at 9am ET Dear Friends, Join us for our regular bi-monthly meeting - to provide consistent communication and camaraderie among our group. PLEASE RSVP to receive the Zoom link. Hope to “see” you there! Warmly, David […]
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 This month, Frank Hanley will present a series of exercises for the hip flexors. “I have had some difficulty with steps for a while," he says. "Suddenly, climbing steps has become quite a […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Thanks to our members for responding to our annual survey! Based on your feedback, this month's discussion topics revolve around planning for next steps: What to do when your current care giving plan isn’t working […]
7:00pm ET | 6:00pm CT| 5:00pm MT | 4:00pm PT EVENT: Columbus Chapter Meeting DATE: Wednesday, January 31, 2024 TIME: 7:00 pm – 8:00 pm EST WHERE: Zoom DETAILS: Join us for our upcoming chapter meeting! Anna Gilmore of FSHD Society will deliver an update re: current clinical trials and the clinical trial enrollment process.
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 […]
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 We kick off 2024 with something new and completely different. At the first session on January 11, we launched the “0 to 1000” 14 Day Challenge… – Pick an exercise, – Start […]
Join us for a Virtual Meeting! Please join us for our "Welcome to 2024" meeting, with lots of exciting news about current and upcoming clinical trials, as well as our guest presenter, Anna Gilmore! Anna has moved to the new position of FSHD Navigator. As Navigator, she helps families by providing resources and information to […]
6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure you receive the reminder and zoom link. Please join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our group's events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific agenda or topic, but we are […]
