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 see you there! At meeting time, please click this link 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's topic is Self-Compassion, with an emphasis on providing support for the many of us who are single, without family in our areas, and being alone during any holiday. Ora Prilleltensky or a colleague... Read More »
Please mark your calendars for the 2022 Central Texas Tacos & Tunes to Cure FSHD Celebration! We will see you on Saturday, November 5, 2022 Please reach out to Ashley Bryan with any questions! She can be reached at ashleybryan1@gmail.com
Please mark your calendars for the 2022 East Tennessee Walk & Roll to Cure FSHD! We will see you on Saturday, November 5, 2022 Please reach out to the Walk Leader, Candice Norman, with any questions! She can be reached at EastTNChapter@FSHDSociety.org. We look forward to seeing you on November 5!
The Western PA Drum & Roll Mark your calendars: The second annual Drum & Roll will take place on Saturday, November 5th, 2022! We invite you to join us in raising funds, awareness, and celebrating coming together as a community again this fall. In this unique event, participants will learn and enjoy a mobility-device-friendly West African... Read More »
Tuesday, November 8th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In the November “Feeling Fit” sessions, Frank Hanley will introduce a variety of neck and shoulder exercises and review the qigong breathing techniques and abdominal (core) exercises that he presented in the September sessions. Frank Hanley is a martial... Read More »
9:00 AM - 4:05 PM Central Time The FSHD Society, in collaboration with our Kansas chapter and the University of Kansas Medical Center, is hosting this year’s Kansas City FSHD 360 conference. The University of Kansas is the epicenter of FSHD research in the U.S. in its role as the coordinating center for the international... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT As the weather gets colder (at least in the northern hemisphere), we turn to a subject that is the bane of many person with FSHD: keeping warm. Not to mention those unfortunate hazards of freezing weather, snow and ice. Loss... Read More »
Tuesday, November 15th 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Early-Onset Parent 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... Read More »
PLEASE JOIN US for the Second Annual "Magic for a Cure" for FSH Muscular Dystrophy (FSHD) featuring Celebrity Magician John Stessel @ The Kolo Klub (at the Pilsener Haus Biergarten) in Hoboken, NJ Tuesday, November 15th 2022 Buy Tickets and/or Sponsorships
Thursday, November 17th On the 4th Thursday of every month, join us for FSHD Radio: Hot off the Press. Every month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Jeffrey Statland, MD This is an unprecedented time for FSHD therapy development. Fulcrum Therapeutics is recruiting for its Phase 3 clinical trial of losmapimod. Dyne Therapeutics and Avidity Biosciences are among several companies that are on the verge of launching... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In the November “Feeling Fit” sessions, Frank Hanley will introduce a variety of neck and shoulder exercises and review the qigong breathing techniques and abdominal (core) exercises that he presented in the September sessions. Did you try these exercises... Read More »
Tim Hollenback, FSHD Radio host #GivingTuesday is a global generosity movement unleashing the power of people and organizations to transform their communities and the world. On Tuesday, November 29th, we will celebrate with an all-day Radiothon event via Facebook Live! FSHD Radio host, Tim Hollenback, will host guests non-stop from 11am-8pm Eastern/8am-5pm Pacific on Facebook@FSHDSociety.... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Our topic this month: How do we decide when/if we need outside help either part time or live-in? It's a big step and not everyone in the family be on the same page. Are you approaching this decision point or in... Read More »
North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday 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! At meeting time, please click this link to join. Hope to see you... Read More »
Philadelphia Chapter Meeting Saturday, Dec. 3rd, 2022 10am – 12pm ET Wissahickon Valley Public Library, 650 Skippack Pike, Blue Bell PA 19422 (Zoom line for those who need to call in): https://us02web.zoom.us/j/87939719109?pwd=TkJIWCt0RWtTWVU4cGtRNmxPcHlsZz09 We hope you will join us for the next meeting of the Greater Philadelphia Chapter! In our September meeting, there was a lot... Read More »
As 2022 comes close to an end, we want to celebrate this amazingly hopeful year with YOU! Please join us for some fun! WHEN: Saturday, December 3th, 2022 12pm – 2pm WHERE: Napoli's Restaurant - 2865 McDermott Rd. #235 Plano, TX 75025 WHO: YOU and your family, and all of our friends who are travelling the FSHD journey... Read More »
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