North Texas Chapter Kick Off Meeting! Saturday, May 7th, 2022 1:00pm-3:00pm Central Time Farmers Branch Rec Center The Oak Room 14050 Heartside Place Farmers Branch, TX Please join us for our FSHD Society North Texas Chapter Kickoff! It’s been a few years since the North Texas has had an active chapter, and I’m looking forward... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Self-compassion is simply about treating ourselves in difficult times with the same kindness and compassion that we would treat a good friend who is struggling. We already know how to do this when it comes to other people. However, making... Read More »
Tuesday, May 10th 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 »
Wednesday, May 11th, 2022 7pm ET | 6pm CT | 5pm MT | 4pm PT We hope you can join us for the next virtual meeting of the New England Chapter! For our May meeting, we will be joined by Dr. Lawrence Hayward, MD PhD from UMass Memorial Medical Center. He will be providing the... 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 »
All California Chapters Meeting Resiliency in Living with FSHD Sunday, May 15th, 2022 2:00pm Pacific Time Please join us for Part 2 of Resiliency in Living with FSHD. Our guest speakers, Dr. Kent Drescher and Dr. Robyn Walser, will discuss, role play, and answer questions about Acceptance and Commitment Therapy (ACT) as a practiced technique to... Read More »
3:00 PM ET 2:00 PM CT | 1:00 PM MT | 12:00 PM PT Get to know your fellow GenZers at this social gathering! This month, Russ Caratenuto, currently a medical student, will talk about his path into medicine, including some of his own research, and then explain some of the up and coming drug... Read More »
Trivia Night, hosted by the Mid-Atlantic Chapter Sunday, May 15th 2022 7pm ET | 6pm CT | 5pm MT | 4pm PT Via Zoom (link to be provided to registered attendees) The Mid-Atlantic Chapter invites you to join their Virtual Trivia Night! The evening will be hosted by Walsh Trivia, who have been featured on... Read More »
Tuesday, May 17th 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 »
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 »
Join Drs. Johanna Hamel, Kate Eichinger, and Natalie Katz to learn about the largest natural history ever done for FSH muscular dystrophy. People of all ages can participate, and children and teenagers are especially needed. Find out why this study is so important and why you and your affected family members' involvement will have 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 »
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, May 26th 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 »
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 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 »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, one of our members, a wheelchair user, will share of her adventures and challenges during a month-long solo trip driving her van from the Upper Mid-west to Florida. This is our mutual support... 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 »
St. Louis In-Person Chapter Meeting Saturday, June 4th, 2022 11:30am Central Time BC's Kitchen in the Meadows of Lake Saint Lewis 11 Meadow Circle Drive, Lake St. Louis, MO 63367 Let’s Reconnect! Please join the FSHD Society St. Louis Chapter for lunch on Saturday, June 4th, at 11:30am at BC’s Kitchen in the Meadows of... 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 »
Lab Tour & Meeting Saturday June 11th, 2022 12:30pm - 3:00pm ET Children's Hospital of Eastern Ontario (CHEO) Ottawa, ON The Ontario Chapter of the FSHD Society invites you to a very special “field trip” event! We are very lucky to be invited to tour the lab of Dr. Hanns Lochmuller at the Children’s Hospital... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, June Kinoshita, director of research and patient education for the FSHD Society, will answer your burning questions about FSHD...or try to. If she doesn't know, she will be mingling with the world experts later this week at the... 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 »
The FSHD Society’s annual FSHD International Research Congress is the premier global scientific conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. The IRC is open to all active researchers working in FSHD and related fields. World renowned clinicians, medical researchers, pharmaceutical industry leaders and basic scientists present and discuss new developments, reinforce collaborative efforts,... Read More »
FSHD Connect is the FSHD Society's flagship educational conference. Held every two years, it is the world's biggest networking event for FSHD, bringing together hundreds of individuals and families living with FSH muscular dystrophy, clinicians, and researchers for two days of immersive learning and workshops. You'll find out about the latest research, drug development, and... Read More »
Saturday, June 18 - Special FSHD Connect edition 9:00 AM ET | 8:00 AM CT | 7:00 AM MT | 6:00 AM PT This month we are meeting live with the Early-Onset Families Unite! breakout session at the FSHD Connect conference in Orlando. Join us via Zoom with us as we discuss strategies for activating... Read More »
FSHD Society Connect Watch Party Saturday, June 18th, 2022 9:00am - 3:00pm Pacific Time Boeing Museum of Flight 9094 E. Marginal Way S Seattle, WA South View Lounge Join us for the afternoon sessions of the FSHD Connect Conference, which will be live-streamed from 10:00am to 2:00pm Pacific Time. Lunch will be provided. All attendees... Read More »
Colorado Chapter "Watch Party" Saturday, June 18th, 2022 10am - 2pm MT Southglenn Library - Meeting Rooms A&B 6972 S Vine St, Centennial, CO 80122 As you may have heard, the FSHD Society is bringing FSHD Stakeholders from around the world together for 6 days in June to chart a strategy to bring effective treatments... Read More »
Every June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD Day. Visit our World FSHD Day page for ideas of how you can get involved by posting images and stories on your favorite social media channels. This year you can also purchase a World FSHD... 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 »
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!
Sunday, June 26th 2pm ET Please join us for the next virtual gathering of the North Carolina Chapter! This will be an informal meeting, and everyone is welcome to share updates, ask questions, and bring your ideas. We will discuss the recent Patient Connect conference, takeaways, and lessons learned. We will also discuss the new... 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 »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT How can you enjoy a real vacation when you're caught up with concerns about caring for your loved one. It takes a huge amount of planning and anticipating contingencies to travel at all. How do you regain that sense of freedom... Read More »
Wednesday, June 29th 6pm ET We hope you will join us for the next meeting of the Western PA Chapter! We will discuss takeaways from the recent Patient Connect conference, the status of research and clinical trials, and what we have to look forward to for the rest of the year. It is sure to... 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 »
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 »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT FSHD is a familial condition, and yet family members can hold different attitudes about how open to be about their diagnosis and how much they are willing to discuss it amongst themselves. Have you wanted to discuss genetic testing or... Read More »
Tuesday, July 12th 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 »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT The FSHD Society is conducting a new survey-based study called “The True Cost of FSHD” and is putting out a call to the FSHD community to participate. This is one of the most important and urgent surveys we have ever done.... Read More »
San Diego Chapter Meeting Saturday, July 16, 2022 11:30am-1:30pm Pacific Time 115 South Clementine Street Oceanside, CA 7th Floor Meeting Room Please join us for a potluck lunch! We will be exchanging stories and life-hacks with fellow FSHers.We will also be kicking off the discussion for our September 10, 2022, Harbor Island Event. We can't wait... Read More »
New England Chapter Summer Picnic Saturday, July 16th 12pm – 4pm (in-person only) New England Air Museum 36 Perimeter Road Windsor Locks, CT 06096 We hope that the entire New England Chapter will be able to join us for our annual summer gathering! This year, we are being hosted by the New England Air Museum.... Read More »
Tuesday, July 19th 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 »
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 »
Team Captain Happy Hour! Thursday, July 21st 4pm PT | 5pm MT | 6pm CT | 7pm ET Ending FSHD will take all of us and that’s why the Walk & Roll to Cure FSHD is so important. It’s why team captains matter so much. When you team up with friends, family, and co-workers to... 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!
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 »
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 »
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, July 28th 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 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 »
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 »
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 »
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!
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 »
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 »
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 »
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 »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month is all about self-care. Donna Russo will lead a session on chair yoga, and Ranae Beeker and Ora Prilleltensky will discuss the practice of mindful self-compassion--showing yourself the same compassion you extend to... 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 »
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 calendars for the 2022 San Diego Walk & Roll to Cure FSHD! We will see you on Saturday, September 10, 2022 Please reach out to the Chapter and Walk Leader, Amy Bekier, with any questions! She can be reached at SanDiegoChapter@FSHDSociety.org. We look forward to seeing you on September 10th!
Please mark your calendars for the 2022 Pacific Northwest Walk & Roll to Cure FSHD! We will see you on Saturday, September 10, 2022 Please reach out to the Walk Leader, Selina Lai, with any questions! She can be reached at PNWWnR@FSHDSociety.org. We look forward to seeing you on September 10th!
Greater Philadelphia Chapter meeting Saturday, Sept. 10th, 10:00am – 12:00pm ET Wissahickon Valley Public Library 650 W Skippack Pike, Blue Bell, PA 19422 We hope you can join us for the next meeting of the Greater Philadelphia Chapter! This will provide an opportunity to discuss the Fulcrum trial and several other topics. There is so... Read More »
Please mark your calendars for the 2022 Colorado Walk & Roll to Cure FSHD! We will see you on Sunday, September 11, 2022 Please reach out to the Walk Leader, Anne Babcock, with any questions! She can be reached at COWnR@FSHDSociety.org. We look forward to seeing you on September 11th!
Please mark your calendars for the 2022 Southwest Florida Walk & Roll to Cure FSHD! We will see you on Sunday, September 11, 2022 Please reach out to Walk Leader, Heloise Hoffmann, with any questions! She can be reached at SWFloridaChapter@FSHDSociety.org. We look forward to seeing you on September 11th!
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will be discussing how to talk about an FSHD diagnosis with family members who may be at risk, particularly children. When do we tell them, if ever? How do we tell them? What can go wrong? We... Read More »
Tuesday, September 13th 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 »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Mark Tarnopolsky, MD PhD Join us for a talk by Mark Tarnopolsky, MD PhD, Professor of Pediatrics and Medicine and Director of Neuromuscular and Neurometabolic Clinic at McMaster University Medical Center in Hamilton, Ontario, Canada. Dr. Tarnopolsky is also CEO and... Read More »
Please mark your calendars for the 2022 Intermountain Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Kathryn Pyne, with any questions! She can be reached at UtahWnR@fshdsociety.org. We look forward to seeing you on September 17!
Please mark your calendars for the 2022 Kansas City Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Kiley Higgs, with any questions! She can be reached at KansasCityChapter@FSHDSociety.org. We look forward to seeing you on September 17th!
Please mark your calendars for the 2022 Canadian National Virtual Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to us, with any questions! Info@FSHDSociety.org. We look forward to September 17th!
Tim Hollenback, FSHD Radio host Tune in to the 3rd Annual Walk & Roll Livestream Celebration on Facebook@FSHDSociety Saturday, September 17, 2022 9:30am-12:30pm Eastern | 6:30-9:30am Pacific LIVE on our Facebook page @FSHDSociety FSHD Radio podcast host, Tim Hollenback, will host a 3-hour, coast to coast party @FSHDSociety. Walkers and Rollers will check in live... Read More »
Please mark your calendars for the 2022 Columbus Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Chapter Director, Sue Aumiller, with any questions! He can be reached at ColumbusChapter@FSHDSociety.org. We look forward to seeing you on September 17th!
Please mark your calendars for the 2022 Ontario Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Steve Johnston, with any questions! He can be reached at OntarioWnR@FSHDSociety.org. We look forward to seeing you on September 17th!
Please mark your calendars for the 2022 Dakotas Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Bryan Domholt, with any questions! He can be reached at DakotasChapter@fshdsociety.org. We look forward to seeing you on September 17!
Please mark your calendars for the 2022 Wisconsin Virtual Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Walk Leader, Tim Hollenbeck, with any questions! He can be reached at WisconsinChapter@fshdsociety.org. We look forward to "seeing" you on September 17!
Please mark your calendars for the 2022 St. Louis Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to the Chapter Director, Marsha Sverdrup, with any questions! He can be reached at StLouisChapter@FSHDSociety.org. We look forward to seeing you on September 17th!
Please mark your calendars for the 2022 South Carolina Virtual Walk & Roll to Cure FSHD! We will see you on Saturday, September 17, 2022 Please reach out to Walk Leader, Sam Miller, with any questions! He can be reached at SouthCarolinaChapter@FSHDSociety.org. We look forward to seeing you on September 17th!
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