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... Read More »
Ontario Chapter Brunch Meeting Sunday November 24th, 2024: 11:00am - 1:00pm ET Milestones Richmond Hill (30 High Tech Rd. Richmond Hill ON L4B 4L9) Join our Ontario FSHD friends for a casual brunch meeting! We will gather to enjoy socializing with each other, discuss plans for 2025, and get research and trial updates from the... 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 »
It's our annual Thanksgiving Special and this year we're featuring musicians living with FSHD. Tune in for interviews, instrumentals, and 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 This meeting has been cancelled because it falls on U.S. Thanksgiving Day. For people living with FSHD who are interested in exercise and fitness, Feeling Fit with FSHD meets on the 2nd... Read More »
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... Read More »
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to... 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, Jane Nemke will provide a presentation on Exploring the Impact of Color on Human Perception and Emotion. A long time member of our community, Jane is an accredited International Association Color Consultant. She... Read More »
St. Louis Chapter Holiday Gathering Saturday, December 7th, 2:00-4:00pm CT 4Hands Brewery, 17081 N Outer 40 Rd, Chesterfield, MO 63005 RSVP: https://go.fshdsociety.org/l/701273/2023-06-22/43jsb5 Join us for a special holiday gathering to celebrate the wonderful work our chapter has done this year and the opportunity to connect with one another. Refreshments and food will be provided. Family... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Dress up in holiday finery or goofiness, make yourself a favorite libation, and join us for some jolly ice-breaking! Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month,... Read More »
NEW DATE AND TIME: Second Monday of the month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT This month, we will share holiday stories - what you enjoy, what stresses you out - and share ideas for getting through it all. The Everything Early Onset group hopes to... Read More »
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen... Read More »
Greater NYC/NJ-area Chapter Virtual Meeting - Wednesday December 11th, 6pm ET Dear NYC & NJ area FSHD Friends, Please join our local FSHD Community for a virtual meeting by zoom on Wednesday, December 11th, at 6pm ET! Let's catch up with one another, get updates from our Summer events, and exciting updates from the 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 We'll wrap up the year with June Kinoshita, senior director of research & education for the FSHD Society, interviewing Frank Hanley, one of the moderators and frequent host of Feeling Fit with... Read More »
Western PA Chapter Virtual Meeting Monday, December 16, 2024 7:00-8:30pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting to celebrate this year's accomplishments and to start discussing our plans for 2025! Please RSVP in order to receive the Zoom link.
NOTE CHANGE OF TIME: 9:00 pm ET | 8:00 pm CT | 7:00 pm MT | 6:00 pm PT RESCHEDULED FROM SEPTEMBER MEETING 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... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This has been an eventful year for pediatric initiatives. Ally Roets will report on action items coming out of the European Neuromuscular Center workshop she attended recently. Kristin Zwickau will share the latest on discussions with the FDA. Come with... Read More »
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Annual Drug Development Update Presented by Nicholas Johnson, MD, Virginia Commonwealth University. This is our annual update on therapy development for FSHD. We’ll hear the latest on Fulcrum, Avidity, and Roche’s clinical trials, as... Read More »
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... 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 »
CANCELLED FOR CHRISTMAS EVE 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... 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 This meeting has been cancelled because it falls on U.S. Thanksgiving Day. For people living with FSHD who are interested in exercise and fitness, Feeling Fit with FSHD meets on the 2nd... Read More »
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Today we'll have an open discussion, starting with the topic of "new year, new opportunities." Ranae, our moderator, will also sharing something related to what we talk frequently about... what do all the terms related to... Read More »
Feeling Fit with FSHD 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 Let's start the year off with some chair yoga! Our session will be led by Donna Russo, a yoga enthusiast, wheelchair dancer, and person living with FSHD. Please... Read More »
Bay Area Chapter Hybrid Meeting (In-Person and Virtual) Sunday, January 12, 2025 | 1:00-4:00pm PT Hoover Pavilion at Stanford University - in Hoover 208 211 Quarry Rd., Palo Alto, CA 94304 RSVP: https://go.fshdsociety.org/l/701273/2023-02-14/42vknk We'd like to invite you to our San Francisco Bay Area Chapter 2025 Kickoff Meeting on January 12, 2025. We will meet... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Wheelchairs and scooters are a topic of evergreen interest to our community and some of our experts with live experiences will share their wisdom and field your questions. How you know when you will need one? What are the pros... Read More »
New England Chapter Virtual Meeting Monday, January 13, 2025 | 7:00-8:00pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-03-03/42xr1c Join us for chapter and FSHD Society updates, a debrief and takeaways from the November 2nd UMASS 360 event, and ideas for the year ahead. Additionally, we'll pose this question for discussion: How do you use your creativity and resilience for... Read More »
NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT Join us at Everything Early Onset for a night of trivia and quizzes on sporcle.com!! Sporcle has a wide variety of categories of trivia quizzes. One of the hosts will share... Read More »
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen... Read More »
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Mindfulness is a practice that has been shown in clinical trials to reduce stress, anxiety, and depression, issues that many people living with a progressive condition like FSHD experience. These psychological symptoms can in... Read More »
San Diego Chapter Virtual Education Meeting DATE: Thursday, January 16th, 2025 TIME: 5:30 - 6:30pm PT WHERE: Zoom Meeting - RSVP for the link DETAILS: Let's kick off 2025 with BetterLife, a health and research platform for people with FSHD. Join us as Kayleigh Worek, Program Manager for BetterLife FSHD at the FSHD Society provides... Read More »
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... Read More »
Sacramento Chapter In-Person Social Gathering Saturday, January 18, 2025, from 10:00am-12:00pm PT Cosumnes River Preserve - 13501 Franklin Blvd, Walnut Grove, CA 95690 Kick off the New Year with the Sacramento FSHD Society Chapter by joining us for a fun community-building event. We will be meeting at Cosumnes River Preserve in Walnut Grove to go... Read More »
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Our guest this month is Mark Tarnopolsky, MD PhD, professor of pediatrics and medicine and director of the Neuromuscular and Neurometabolic Clinic at McMaster University Medical Center in Hamilton, Ontario, Canada. Dr. Tarnopolsky is also CEO... Read More »
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Heloise Hoffmann Heloise Hoffmann, now a student at Stanford University, explains the science of FSHD to your kids (and you) in easy-to-understand terms. She'll answer your questions and discuss the new treatments that are being developed, including some... Read More »
Please join our local FSHD Community for a virtual meeting by zoom on Wednesday, January 22nd, at 6pm ET! Let's catch up with one another and make plans for the New Year! Please CLICK HERE to RSVP and receive the Zoom link for the meeting. Hope to "see" you there! Warmly, David Rubin, NYC/NJ -... Read More »
Feeling Fit with FSHD 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 are thrilled to welcome back Lonwabo Nene, a South African living with FSHD who previously led a great session on exercises that have made a difference to... Read More »
Pacific Northwest Chapter New Year Meeting DATE: Saturday, January 25, 2025 TIME: 12:00 to 2:00pm PT WHERE: Both in-person at the Sellwood-Moreland Library Community Room (7860 SE 13th Ave, Portland, OR) and virtual via Zoom. Please RSVP for the Zoom link. DETAILS: Trish Kean has been a licensed massage therapist since 1998 and has had... Read More »
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen... Read More »
Virginia Chapter Monthly Virtual Meeting Tuesday, January 28, 2025 6:00pm - 7:00pm ET Virtual via Zoom - RSVP for the link Join our monthly meeting for casual conversations! RSVP: https://go.fshdsociety.org/l/701273/2023-03-14/42z7g7
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 »
FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a networking meeting for FSHD patients and their families. It is a great opportunity to connect with other patients and families across Europe. We hope to... Read More »
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We're thrilled to welcome this month's guest, Marjorie Aunos, PhD, a psychologist, researcher, professional speaker, and consultant on accessibility and inclusion. She teaches organizations to solution-find and build environments that are accessible, inclusive, and welcoming... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Families are our primary social support groups and greatly influence how we live with FSHD. At the same time, every family is unique. In this conversation, we will discuss how our family dynamics affect our adventure with this chronic condition.... Read More »
NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT Are you a teenager diagnosed with FSHD? We've been there and know how scary and lonely it can be. Here at Everything Early Onset, we want to be the person we... Read More »
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen... Read More »
Colorado/New Mexico Chapter Virtual Meeting Tuesday, February 11, 2025 6:00 - 7:00PM MT Zoom meeting - please RSVP for the link This meeting is a chance for our Colorado Chapter to engage with our FSHD community in New Mexico by building better communications, resources and support. Please join us for engaging conversation and brainstorming. RSVP:... Read More »
Feeling Fit with FSHD 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 Rescheduled from January 23. We are thrilled to welcome back Lonwabo Nene, a South African living with FSHD who previously led a great session on exercises that have... Read More »
North Carolina In-Person Chapter Luncheon Saturday, February 15, 2025 at 1:00 pm ET Little Italy (Winston-Salem area) 696 Angus Street, Rural Hall, NC 27045 - http://www.littleitalyruralhall.com/index.html Please join us for an in-person group lunch! Come connect with fellow members, share updates and enjoy a meal together. RSVP by 2/10 to ensure we have enough seating.... Read More »
Young Adults Monthly Meeting 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... Read More »
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Have you or your child had surgery to stabilize a winging scapula, or are you thinking about it? Lexi Pappas will join us this evening to speak about her experience. If you have also scapular surgery, please come... Read More »
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... Read More »
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen... Read More »
Multi-Chapter Virtual Meeting Tuesday, February 25, 2025 from 7:00 pm - 8:00 pm ET Zoom - RSVP to get the link This is a great opportunity to connect, share experiences, and stay informed on the latest news, research, and resources from the FSHD community. Hosted by the New England Chapter, this meeting we will be... 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 »
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Anesthesia During Surgery for People with FSHD With Bruna M. Castro de Oliveira, MD. With apologies, this meeting has been rescheduled to Wednesday, February 26. It will be recorded and posted on our YouTube... Read More »
Feeling Fit with FSHD 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 this “Feeling Fit” session, Frank Hanley will present an exercise session for the shoulders, neck and the face. He will demonstrate some eye exercises too. “I get... Read More »
Western PA Chapter Virtual Meeting - BetterLife Demo Thursday, February 27, 2025 from 6:00pm - 7:00pm ET Via Zoom (Link will be sent upon receipt of RSVP) During this meeting we will be joined by Kayleigh Worek, BetterLife Program Manager, who will be giving an in-depth demo of the BetterLife platform. RSVP: https://go.fshdsociety.org/l/701273/2021-04-30/241nsl
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to... 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, two of our members will share their experiences with hiring personal care attendants and researching potential help with the VA. Please come and join us as we learn more about these two very... Read More »
Alberta Chapter In-Person Meeting Thursday, March 6, 2025 from 5:30pm - 8:30pm MT National Westhills - 180 Stewart Green SW, Calgary, AB We are gathering our members for a fun and family-friendly evening. Stop by after work, have a drink, grab a meal, and catch up with your FSHD community! We will also have a... Read More »
4:00 pm ET | 3:00 pm CT | 2:00 pm MT | 1:00 pm PT We are planning a special Wellness Hour event this month featuring art from our community members. We have 12 presenters and 62 examples of creativity/art to share with the community. We are starting one hour earlier than usual to make... Read More »
7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT We were so pleased the several teenagers with FSHD came to last month's teen talk. Meeting another person with FSHD is life-changing. Suddenly, you are not alone. We'd like to devote this month's meeting to teens again. If you are... Read More »
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen... Read More »
Feeling Fit with FSHD 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 two of this workshop, Frank Hanley will review exercises presented in Part 1 (presented February 27), and provide additional exercises for the shoulders, neck, face and... Read More »
Chicagoland Chapter Virtual Meeting Thursday, March 13, 2025 from 6:10 - 7:10 PM CT Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and brainstorming.
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This is a reschedule of what had been planned for January. Our guest this month is Mark Tarnopolsky, MD PhD, professor of pediatrics and medicine and director of the Neuromuscular and Neurometabolic Clinic at McMaster University... Read More »
Ontario Chapter - Virtual Meeting Tuesday March 18, 2025 at 7:00 PM ET Via Zoom - RSVP to get the link. We will discuss our first Ontario FSHD Conference in May that we hope everyone will attend. Also time to ask questions and share ideas. RSVP: https://go.fshdsociety.org/l/701273/2020-05-15/j1m8k
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Daniel Hinds, MD This month, we'll be joined by Daniel Hinds, MD, a Clinical Assistant Professor of Pediatrics, Division of Pulmonary Medicine at the University of Iowa. Dr. Hinds is the Fellowship Director and Director of the Rare... Read More »
Raise Your Voice! Advocacy Call to Action - FSHD University with Anna Gilmore 19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Are you ready to make an impact for FSHD research? Join us on March 20 as we discuss our call to... Read More »
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... Read More »
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen... Read More »
Virginia Chapter Monthly Virtual Meeting 6:00pm - 7:00pm ET, every 4th Tuesday of the month Virtual via Zoom - RSVP for the link DETAILS: Join us for our monthly meeting for casual conversations!
New England Chapter Virtual Meeting Tuesday, March 25, 2025, from 7:00 pm - 8:00 pm ET Hosted via Zoom - RSVP to get the link We’re excited to invite you to our New England Chapter virtual meeting for March. During this time, our discussion will focus on physical therapy. Chapter Director Kathy Senecal will also... 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 »
Special Topic: Demonstrations and illustrations of suitable exercises for all severities of FSHD 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 Lonwabo joins us once again for this follow up from his last month’s Feeling Fit discussion. This time, he... Read More »
Columbus Chapter Virtual Meeting Thursday, March 27th, 2025 from 7:00 - 8:00pm Zoom Meeting - RSVP for the link Let's gather for our Columbus Chapter Meeting where we will cover the recent chapter leader transition, make member introductions, review the BetterLife program, and discuss the date for our 2025 Walk & Roll to Cure FSHD.
8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to... 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, Kathy Senecal is providing a session on yoga breathing techniques. She will be targeting diaphragmatic, energy, sleep, and stress- reducing techniques. Include a photo of her (in Media Library) is possible. We will... Read More »
British Columbia Chapter - Virtual Meeting Wednesday, April 2nd, 2025 - 6:00 PM Via Zoom - link sent upon receipt of RSVP Check in with fellow BC Chapter members to review our walk and roll program and discuss our upcoming FSHD 360 in June.
NYC/NJ-Area In-Person Chapter Meeting Saturday, April 5, 2025 from 10:00AM - 12:00PM ET Madison Cafe & Grill - 4 Pembroke Place 101, Edgewater, NJ 07020 Join us for breakfast and an opportunity to connect in person to share thoughts, exchange ideas, and get informed on the latest updates from the FSHD Society. RSVP: https://go.fshdsociety.org/l/701273/2023-01-13/42py3c
Dakotas Chapter In-Person Meeting Sunday April 6, 2025 at 2:00pm CT Location TBD Join our Spring chapter meeting for the opportunity to reconnect with each other and share our experiences. More information coming soon. RSVP: https://go.fshdsociety.org/l/701273/2023-05-09/439tq1
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen... Read More »
Feeling Fit with FSHD 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, Kathy Senecal is providing a session on yoga breathing techniques. She will be targeting diaphragmatic, energy, sleep, and stress- reducing techniques. Include a photo of her... Read More »
Chicagoland Chapter Monthly Virtual Meeting 6:10 - 7:10 PM CT, every second Thursday of the month Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's guest will focus on hands: tips on how to strengthen and the role of occupational therapy. Our guest is Debbie Olerud-Curley COTA/L, a licensed occupational therapy assistant. Debbie graduated from North Dakota State School of Science in 1988.... Read More »
NEW SCHEDULE: Second Monday of every other month. Next meeting is in May 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and... Read More »
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Brun~Brianna Brianna Brun, MD, is a neuromuscular specialist at the University of Rochester. She is stepping into the legendary Rabi Tawil's role. She'll be talking about the MOVE Pediatric study, the importance of routine clinical appointments for children,... Read More »
North Carolina Third Thursday Chapter Meeting 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... Read More »
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Physiotherapy and exercises with FSHD – Optimising mobility and function Physiotherapist Ulrike Uta, of the Muscular Dystrophy Support Centre in Coventry, UK, has extensive experience helping individuals with FSHD. She notes that muscle weakness... Read More »
Arizona Chapter Community Lunch Saturday, April 19th, 2025 | 12:00-2:00pm Brother John's Beer Bourbon & BBQ - 1801 N Stone Ave, Tucson Please RSVP to Ray at rayjordanau@gmail.com or call 520-461-8125 so we can keep the venue updated with the number of attendees.
Western PA Virtual Chapter Meeting Monday, April 21, 2025 from 7:00pm - 8:00pm ET Via Zoom During this meeting we will be joined by Anna Gilmore, Sr. Director of Education & Advocacy, who will provide a tour of the new Care Connector tool and discuss with us its features and future developments. Care Connector is... Read More »
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT We'll be joined by one of our FSHD rock stars, Heloise Hoffmann. Diagnosed at 13, Heloise went through difficult teen years and triumphed as she accepted and even embraced her diagnosis. Now a student at Stanford,... Read More »
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen... Read More »
Virginia Chapter Monthly Virtual Meeting 6:00pm - 7:00pm ET, every 4th Tuesday of the month Virtual via Zoom - RSVP for the link DETAILS: Join us for our monthly meeting for casual conversations!
St. Louis Chapter Virtual Meeting Tuesday, April 22, 2025 at 6:00 pm Virtual via Zoom (link will be sent upon receipt of RSVP) DETAILS: Please join us for conversation and support. RSVP: https://go.fshdsociety.org/l/701273/2023-03-01/42xfv2
Feeling Fit with FSHD 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 Donna Russo to lead a session of chair yoga. She will show us gentle stretches and exercises from yoga that are adapted for people in... Read More »
