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
North Texas Virtual Chapter Meeting 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
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 »
Utah Chapter Virtual Meeting Tuesday, April 29, 2025, 7:00pm-8:00pm MT Virtual via Zoom - RSVP for the link Please join us for conversation and support. RSVP: https://go.fshdsociety.org/l/701273/2023-06-22/43jsb5
New England Chapter Virtual Meeting 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... Read More »
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... Read More »
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 Dr. David Jaffe from Stanford's Mechanical Engineering Department. He teaches "Perspectives in Assistive Technology" and works with students and community members on... 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 »
Feeling Fit with FSHD: Waking the Qi with Jennifer Eash 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 us for "Waking the Qi: A Vibrant Practice to Activate Internal Energy," with Jennifer Eash. Jennifer will lead a 50-minute seated... 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 »
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,... Read More »
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... Read More »
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... 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 »
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... 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 »
Join the Denver Colfax Marathon Team for the FSHD Society! The Denver Colfax Marathon is a nationally recognized event featuring unique courses incorporating the iconic landmarks of the Mile-High City. Registration details coming soon. Join our Team to fight FSH Muscular Dystrophy. The event starts at Denver’s City Park, on the east side of Ferrill... Read More »
Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Have you heard about BetterLife FSHD? It's the FSHD Society's pathbreaking web portal for helping you navigate your health journey. As you answer the short surveys, the system will enable you to track what you are... Read More »
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... 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 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.... Read More »
North Texas Virtual Chapter Meeting 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
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 »
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 »
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!
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... Read More »
