Dear friends, Welcome to the "Fourth Monday" 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 looking forward to catching up with everyone, and sharing our updates... 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 »
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 »
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! At meeting time, please click this link to join. Hope to see you... 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, we will continue our robust discussion on instrumental activities of daily living (ADLs). We encourage all our Women on Wellness to share their great tips and tricks (and challenges) with preparing meals, housekeeping,... Read More »
Please join the Columbus Chapter and Nationwide Children's Hospital for an exciting day of research and community! Hear from Dr. Kevin Flanigan, Dr. Scott Harper, and Dr. Nizar Saad, then have the opportunity to actively participate in a study! In addition, hear from FSHD Society's Columbus Chapter Director Susan Aumiller, screen a short documentary, and... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Prepare your favorite alcoholic or non-alcoholic drink (you can download below a pdf of some cocktail recipes created by Susie Kanewske, director of the Chicagoland chapter formerly the Northwest Pacific chapter director). We want everyone to tell us what they... Read More »
Tuesday, July 11th For this month’s Community Profiles episode, we welcome Beverly Weurding, the visionary behind the Wheelchair Dancers Organization. Diagnosed with Limb Girdle Muscular Dystrophy at the age of 55, Beverly was navigating life as a new wheelchair user at a time when many contemplate retirement. Empowered by her physical therapist's support, she founded... Read More »
7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT This week, we are excited to welcome Jennifer Egert, PhD, as our guest speaker! Dr. Egert is a clinical psychologist with FSHD who offers mindfulness-based psychotherapy and workshops in Mindfulness Based Cognitive Therapy (MBCT) and mindful approaches to cope with... 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 Join this month's guest, Ryan Levinson, who will be sharing some of his favorite "exercise cheats." Ryan is a legend in our community for his physical training regimen that has enabled him... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Jeffrey Statland, MD Join us for a conversation with Jeffrey Statland, Professor of Neurology at University of Kansas Medical Center in Kansas City, Kansas. He is the co-director of the FSHD Clinical Trial Research Network (CTRN) and his specific research... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Epic Bio, a San Francisco based therapeutics company, is developing a gene therapy medicine specifically for FSHD patients. The new product, termed EPI-321, leverages a CRISPR-based platform to precisely find and fix the specific issue in the genome that causes FSHD.... Read More »
11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT FSHD Young Professionals 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 just graduating, starting a... Read More »
Dear friends, Welcome to the "Fourth Monday" 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 looking forward to catching up with everyone, and sharing our updates... 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 »
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 »
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! At meeting time, please click this link to join. Hope to see you... Read More »
Thursday, July 27th The 2023 Walk & Roll to Cure FSHD is just around the corner, and Beth Johnston, the FSHD Society's Chief Community Engagement Officer, has all the details you need to know! Listen to hear about what the Walk & Roll is, how to get involved, and what’s new this year. Led entirely... 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 Rita Lynn (far right) with her family Join us for a session led by Rita Lynn Lawrence. After her diagnosis of FSHD, she retired from her photography career and became an advocate... Read More »
Heartland Chapter Happy Hour Friday, July 28, 2023 3:30 pm - 5:30 pm CT Boulevard Beer Hall - 2534 Madison Ave, Kansas City, MO 64108 Join us for an afternoon of fun and networking where you can connect with other members of the FSHD community. Drinks and light appetizers will be provided. Please RSVP below.
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 Beth Babich is moderating this month's Women on Wellness around a topic she has been eager to discuss: Questions I wish I could ask. Do you have some too? This is your opportunity to unburden... Read More »
Thursday, August 3, 2023 7pm ET/6pm CT/5pm MT/4pm PT We'll bring together all our team captains via Zoom, to celebrate and honor your hard work, help you pack your toolkit for success, and have a little fun! Invite your Team Members, too!
Western PA Summer Picnic Saturday, August 5th, 2023 Adams Township Community Park, 698 Valencia Road, Mars, PA 16046 More details forthcoming! We hope you can join us again this year for the annual summer gathering of the Western PA Chapter! We will be returning to the fantastic Adams Township Community Park pavilion, for a BBQ... Read More »
