Please mark your calendars for the 2022 Minnesota Walk & Roll to Cure FSHD! We will see you on Sunday, September 25, 2022 Please reach out to the Chapter Director, Jacob Wise, with any questions! He can be reached at MinnesotaChapter@FSHDSociety.org. We look forward to seeing you on September 18th!
Dear FSHD Society friends, We want to make sure that you know about a fantastic opportunity to support a fellow FSHD’er: The world premiere of the play, All of Me, is showing at the Barrington Stage Company in Pittsfield, MA! The lead character is played by Madison Ferris, actress and Broadway star living with FSHD.... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Our topic this month is "Talking about FSHD with family and friends." Sharing a diagnosis when first given, planning for family, and planning ahead for care as we age. This monthly meeting is for those of you who are providing care... Read More »
Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »
Please mark your calendars for the 2022 New England Walk & Roll to Cure FSHD! We will see you on Saturday, October 1, 2022 Please reach out to the Walk Leader, Lexi Pappas, with any questions! She can be reached at AlexiPappas19@gmail.com. We look forward to seeing you on October 1!
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we will have a physical therapist who specializes in pelvic floor relaxation concerns, such as incontinence, come and speak with us. Katie Dougherty, PT,DPT has graciously offered to donate her time and expertise... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, join us for a discussion on coping with the changes brought about by FSHD in various aspects of your life. What have been or still are your greatest challenges? Share the life hacks you use to deal with... Read More »
Tuesday, October 11th 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 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. Eastern Time. Come dressed for exercise and have on hand any... Read More »
Please mark your calendar for the 2022 Los Angeles Walk & Roll to Cure FSHD! We will see you Saturday, October 15, 2022 Please reach out to the Walk Leader, James Rice, with any questions! He can be reached at LosAngelesChapter@FSHDSociety.org. We look forward to seeing you on the 15th!
Please mark your calendars for the 2022 Atlanta Walk & Roll to Cure FSHD! We will see you on Sunday, October 16, 2022 Please reach out to the Chapter Director, Jack Gerblick, with any questions! He can be reached at AtlantaChapter@FSHDSociety.org. We look forward to seeing you on October 16th!
Tuesday, October 18th 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 »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Join Drs. Michael Cole, Kathy Mathews, Christopher Cooper, and Eyad Hanna, of the University of Iowa as they discuss a new study regarding the frequency of gastrointestinal and urological symptoms in FSHD, as well as their impact on quality of... Read More »
10:00-3:00 PM Mountain Time The FSHD Society, in collaboration with our Utah and Idaho chapters and the University of Utah, is hosting this year’s Utah FSHD 360 conference. The University of Utah is one of the first FSHD research centers in the U.S., and played a critical role in discovering and studying a large Utah... 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. We'll be sharing our concerns about our families' future needs as well as solutions and ideas that have helped. This virtual meeting is a... Read More »
Please join us for the monthly virtual meeting of the Virginia Chapter!! This is an informal, conversational meeting where we all share ideas, frustrations, and life’s little wins. We welcome all friends, old and new! Sign up at this link to receive a meeting reminder every month. At meeting time, click this link to join... Read More »
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. Eastern Time. Come dressed for exercise and have on hand any... Read More »
Thursday, October 27th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT 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,... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This is our mutual support and social group for women of all ages who are living with FSHD. We created this women-only space to discuss health, self-care, and any other topics that we find easier... 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 »
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