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 »
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 last Wednesday of the 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 »
Western PA Chapter 3rd Annual Family Picnic Saturday, August 3rd, 12:00pm ET Location: Adams Township Community Park, 698 Valencia Rd., Mars, PA 16046 Please join us for this fun, in-person event where we can be in community and enjoy time together. The picnic will be held at Adams Township Community Park, 698 Valencia Rd., Mars,... Read More »
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... Read More »
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... Read More »
Meet Mary Beth McCabe, the passionate Captain of Team McCabe and the NJ Shore Walk & Roll Leader. As host Tim Hollenbeck drums up support for the 2024 Walk & Roll season, hear how Mary Beth got involved and learned to host a successful fundraiser. Mary Beth is a hoot, a holler, and a half.... Read More »
Good Bad Things Theatrical Premiere For nearly a year, we’ve been following the journey of "Good Bad Things," and now, the award-winning film starring Danny Kurtzman, who lives with FSHD, will be screened in 50 AMC Theaters across the US on August 15th! "Good Bad Things" brings authentic disability representation to the big screen, challenging... 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 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.... Read More »
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... Read More »
St. Louis Chapter In-Person Support Meeting Tuesday, August 20th, 2024, 7:00-8:00pm CT Webster Groves Public Library - 301 E Lockwood Ave, Webster Groves, MO 63119 We invite all of our St. Louis Chapter members to join us on Tuesday, August 20th for our upcoming Chapter Meeting at Webster Groves Public Library. During this time, our... 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 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... Read More »
12:00-2:00pm ET | 11:00am-1:00pm CT | 10:00am-12:00pm MT | 9:00am-11:00am PT Dakotas Chapter Meeting Saturday, August 24, 2024 Location: TBD Restaurant Join the Dakotas Chapter for a special community lunch event this August. During this time, we will share updates from the 2024 Patient Connect Conference, get people excited for the 2024 Minnesota Walk &... Read More »
Virginia Chapter Social Event: Norfolk Tides vs. Worcester Red Sox Saturday, August 24, 2024 at 6:00pm Harbor Park Stadium, 150 Park Ave, Norfolk, VA 23510 Please join us on August 24 at Harbor Ballpark! We have reservations at 6:00pm for the Norfolk Tides vs Worcester Red Sox. There are 5 ADA seats and 15 other... Read More »
In this episode, host Tim Hollenback talks with Dan Wilson, a retired respiratory therapist and NASCAR enthusiast. In addition to discussing resources for home safety and building support networks to help with FSHD’s relentless progression, Dan discusses his hope to build an FSHD community in the Indianapolis area. FSHers of Indiana, if you’re listening, reach... 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 »
Southeast Multi-Chapter Virtual Meeting Tuesday, August 27, 2024 at 6:00pm ET Amy Halseth and Erika Escartin from Avidity Biosciences will give a short presentation on the recent data from FORTITUDE, followed by an open Q&A session about participating in clinical trials, the drug development process, the potential new drugs that are in the pipeline, or... 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 last Wednesday of the 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 »
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... Read More »
