First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we continue our discussions about transitioning to assistive devices, looking closer at how insurance impacts this need and looking at building community within our group. This is our mutual support and social group... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is transitions in mobility. How do we know it’s time for an assistive device , or to switch from walker/cane to a motorized scooter or power chair? Also knowing it doesn’t... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
FSHD Family Picnic Saturday, August 6th 12pm – 4pm ET Adams Township Community Park 698 Valencia Rd Mars, PA 16046 We hope you can join us for the annual summer gathering of the Western PA Chapter! We are excited for a casual, agenda-free lunch, and visiting with friends old & new. Our location has... Read More »
3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT This month, we'll be talking about fundraising! Maybe this sounds intimidating, but learning how to get your story out there and build a team of friends, family, and other supporters to raise donations is incredibly empowering. Get to know your fellow... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we'd like to have some fun and give our growing group a chance to get to connect with one another on a deeper level. We'll start by asking everyone to use the Chat window to share three things... Read More »
Tuesday, August 9th 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 »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
Bay Area Chapter Meeting Sunday, August 14, 2022 2:00pm - 3:00pm Pacific Time You're invited to a virtual gathering of our San Francisco Bay Area Chapter of the FSHD Society to discuss our upcoming Walk & Roll, as well as checking in with our members for a casual chat to see how everyone is doing.... Read More »
Tuesday, August 16th 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 »
Florida Chapters: Tampa, Southwest Florida, and Northeast Florida! Wednesday, August 17th 6:30pm ET | 5:30pm CT | 4:30pm MT | 3:30pm PT Please join us for a combined virtual meeting of all the Florida chapters! We are excited to bring together members of the Southwest, Tampa, and Northeast regions and beyond for a casual,... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
August 18-28, 2022 Visit all participating breweries in the San Diego area and have your name entered into a drawing for a flat screen TV. In order to receive a stamp, you must purchase at least one full-priced beer from that brewery. You may start and end at any brewery you like. Take all the... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Kent Drescher, PhD Dealing with life’s slings and arrows alongside FSHD may feel like a lot, too much at times, for a person to deal with. Mental health researchers have long focused on factors that increase a person’s risk of developing... Read More »
San Diego Chapter Meeting Thursday, August 18, 2022 5:30pm - 6:30pm Pacific Time The San Diego Walk & Roll is only a few weeks away!! Sign up now! Team Captain's Kick Off Party! Pet Costume Contest! Children's Chalk Art Activities! Fun you don't want to miss!! We're so excited about our upcoming fun fundraiser Walk &... Read More »
The 2022 Family Day at the Aquarium! The planet is alive! Explore it with us at the 2022 UPIN Family Day at the Loveland Living Planet Aquarium on Saturday, August 20th! Through fun and intentional programming, it is our hope here at UPIN to demonstrate our commitment to improving the overall quality of life for... 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 »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
Thursday, August 25th 9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT Our Hot off the Press guest this month is Beth Johnston, FSHD Society's Chief Community Engagement Officer. She will be speaking all about the 2022 Walk & Roll to Cure FSHD - what it is, how you... Read More »
The Western Washington FSHD Community Group invites you to join them virtually, every month on the 4th Saturday via Zoom web conference: Join Zoom Meeting from your computer or tablet: https://zoom.us/j/154396011 Or by Phone: 669 900 6833, Meeting ID: 154 396 011 Questions? Please contact: BobLouden@yahoo.com We look forward to “seeing” you there!
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT We're going to cover two topics this month. The first topic is "Have you purchased equipment to help with your FSHD partner's activity? Like lifts, power wheelchairs, braces, hearing aids, vehicles, ramps installed for access in your house, staircase lifts? Was... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT Calling all care partners to join us this month for a conversation about helping your loved one with self-care. This can be delicate ground as your partner wants to preserve as much independence as possible while adapting to losses in physical... Read More »
All Texas Chapter Meeting Tuesday, August 30th, 2022 6:30pm - 8:00pm Central Time The CenTex chapter invites you to join us for a research update from Jamshid Arjomand, FSHD Society's Chief Science Officer. We will also discuss Texas events like the Ft. Worth Walk & Roll and Central Texas Tacos & Tunes. We can't wait to "see"... Read More »
9:00 PM ET | 8:00 PM CT | 7:00 PM MT | 6:00 PM PT We're In This Together During this time of self-isolation because of the covid-19 crisis, it's important to stay connected. Join FSHD Radio show host Tim Hollenback every Wednesday evening on Facebook Live for an open-ended conversation about whatever is on... Read More »
Thursday, September 1, 2022 6:00pm ET Via Zoom We hope you'll join us virtually on September 1st for our official kickoff of the Western Pennsylvania Chapter's 2022 Drum & Roll celebration! The Drum & Roll to Cure FSHD is a unique and fun event, featuring West African music and dance - and can be adapted to... Read More »
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