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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 are starting one hour earlier than usual to make sure we have enough time. Stay tuned for more details! Our monthly Zoom meeting […]
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 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 support one another. It […]
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 […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK |Â 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. […]
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 […]
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 Join us for our monthly Parents’ 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, and […]
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 […]
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 Exercise and Physical Therapy for FSHD, with Ulrike Uta, MSc, MCSP. Physiotherapist Ulrike Uta, of the Muscular Dystrophy Support Centre in Coventry, UK, has extensive experience helping individuals with FSHD. She notes that muscle […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our […]
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 […]
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 […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK |Â 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 […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in […]
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. […]
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 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 support one another. It […]
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 […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ 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, and […]
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, […]
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 […]
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 […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults 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 […]
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, […]
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 […]
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
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 […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK |Â 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 […]
Colorado Chapter In-Person Meeting Saturday, April 26th, 2025 from 9:00 - 11:00 am Bean Fosters - Golden: 720 Golden Ridge Rd, D Golden, Colorado 80401 Informal gathering to catch up on the latest news and share our FSHD journey with friends over coffee. RSVP: https://go.fshdsociety.org/l/701273/2020-05-15/j1m9k
Greater Philadelphia Chapter In-Person Meeting Saturday, April 26, 2025 from 1:00 - 4:00pm ET Wissahickon Valley Public Library Community Room - 650 Skippack Pike, Blue Bell PA 19422 ***Option to attend virtually via Zoom (RSVP to receive the link) We will gather to catch up, socialize, and discuss BetterLife - a new platform dedicated to […]
Michigan Chapter Meeting DATE/TIME: Monday, April 28th, 2024 – 7:00PM ET Virtually by Zoom. Please RSVP to receive the link. Please join us for conversation and support. RSVP: https://go.fshdsociety.org/l/701273/2023-04-09/433mcc
We meet virtually via Zoom on the last Wednesday of each month, from 7:00pm – 8:00pm CT RSVP: https://go.fshdsociety.org/l/701273/2022-11-04/3sbgxx
Tuesday, April 29, 2025, 7:00pm-8:00pm MT Virtual via Zoom – RSVP for the link Please join us for conversation and support.
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 […]
Wednesday, April 30, 2025, 7:00 pm – 8:00 pm ET Zoom – RSVP to get the link We’re excited to invite you to our New England Chapter virtual meeting for April. During this meeting, we will discuss: 1. Site proposals for the annual New England Chapter lunch; 2. Program updates and the latest from the […]
Ontario FSHD 360 May 3 from 9:00 AM to 4:00 PM Co-hosted by FSHD Canada Foundation and FSHD Society Burnhamthorpe Community Centre 1500 Gulleden Dr. Mississauga, ON L4X 2T7 CANADA FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance […]
Bay Area Chapter Meeting Sunday, May 4, 2025 from 1:00pm-4:00pm PT Stanford University, Hoover Pavilion. 211 Quarry Road. Palo Alto, CA 94304, in Hoover 208 At this meeting, we will be joined by David Jaffe from Stanford's Mechanical Engineering Department. He teaches "Perspectives in Assistive Technology" and works with students and community members on projects […]
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 […]
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 […]
Feeling Fit with FSHD: Waking the Qi with Jennifer Eash 18:00 PM CET | 17:00 PM UK |Â 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join us for "Waking the Qi: A Vibrant Practice to Activate Internal Energy," with Jennifer Eash. Jennifer will lead a 50-minute seated […]
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 […]
Sacramento In-Person Chapter Meeting Saturday, May 10, 2025 from 10:00AM - 1:00PM PT UC Davis Arboretum - Google Map link: https://maps.app.goo.gl/icACixh8cvPqXGLK8 Join us for a leisurely afternoon at the UC Davis Arobetum. Bring your lunch, snacks and water. We can stroll through their beautiful garden and have lunch under a huge majestic oak tree. Oh, […]
Conversations that Build the FSHD Community 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join the conversation, which will be inspired by questions drawn from David Brooks’ book How to Know a Person: The Art of Seeing Others Deeply and Being Deeply Seen and connect with others who […]
NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT This month we're gathering to socialize and get to know one another better. Archer would love to chat about what […]
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 […]
The Pediatric MOVE Study Thursday, May 15 19:00 CET | 18:00 GMT | 1:00pm Et | 12:00pm CT | 11:00am MT | 10:00am PT More than 50% of people with FSHD develop symptoms as children or teens. When treatments to slow or stop FSHD are approved, common sense suggests that it will be best to […]
Join us for a virtual meeting for folks living with FSHD, and their care system, in Virginia.
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults 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 […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT We plan to have a guest from one of the companies working on FSHD therapies to share their progress and discuss how their trials can be more inclusive. Stay tuned. Join us for our monthly Parents’ Roundtable on […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK |Â 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. […]
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 […]
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!
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 […]
FSHD University - Fulcrum's Phase 3 Clinical Trial Wednesday, May 28 1:00 p.m. ET | noon CT | 11:00 a.m. MT | 10:00 a.m. PT | 17:00 GMT | 18:00 CET Fulcrum’s Phase 3 Reach study was the first phase 3 study ever conducted for FSHD. The trial did not meet its primary endpoint and […]
A meeting space for folks living with FSHD, and their care system, in the New England area.
FSHD 360 Vancouver Sunday, June 1 from 10:00am-3:30pm Creekside Community Recreation Centre 1 Athletes Way, Vancouver, BC V5Y 1V4, Canada FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance to hear from the research and advocacy leaders in Vancouver […]
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 […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in […]
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 […]
Save the date! The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. With the recent advances in FSHD research and clinical advances, this conference has become catalytic in translating ideas into potential therapies. Join us in Amsterdam for what promises to be a […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK |Â 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. […]
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 […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults 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 […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ 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, and […]
We are getting together to celebrate World FSHD Day. We are going to meet for drinks and dinner, staying up to see the lighting of the Calgary Tower in ORANGE! Family friendly!
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 […]
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!
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 […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK |Â 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. […]
Breathing with FSHD Thursday, June 26 5:00pm ET | 4:00pm CT | 3:00pm MT | 2:00pm PT Note: This webinar is not at our usual time due to Dr. Benditt’s clinic schedule. Joshua Benditt, MD, University of Washington, is a professor of pulmonary, critical care and sleep medicine at the UW School of Medicine. As […]
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 […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our […]
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 […]
Feeling Fit with FSHD 18:00 PM CET | 17:00 PM UK |Â 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. […]
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 […]
The Triple Bypass The Triple Bypass stretches 118 miles, with 10,800 feet of elevation gain over 3 mountain passes: Juniper, Loveland, and Vail. The race will take place on July 12, 2025. George is the founder of Team FSHD Cycling. Since 2017, the team participates in endurance bicycle events to raise awareness and funds for […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in […]
NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 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 […]
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 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 support one another. It […]
Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ 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, and […]
The Role of the Physiatrist in Managing FSHD Thursday, July 17 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 Most people with FSHD have heard they should see a neurologist. But when we advise them to also establish care with a physiatrist, […]
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults 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 […]
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 […]
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!
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 […]
