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,... Read More »
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... Read More »
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... 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... 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... 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... 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... 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... 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... 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... 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... 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... 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:... Read More »
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... 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... 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... 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... Read More »
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,... Read More »
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... 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:... 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... 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... 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... 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... 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... 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... 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... Read More »
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... 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... 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... 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... 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... 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... 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... 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... 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... 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... 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... Read More »
Please join us for appetizers and drinks! WHEN: Sunday December 4th, 2022 4pm – 6pm WHERE: Brothers Bar & Grill – 7407 Park Meadows Drive, Lone Tree CO 80129 WHO: YOU and your... Read More »
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... 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'll be talking about "mattering," feeling valued as a... 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... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT “FSHD is always attacking me… it never takes a day off. I practice qigong... Read More »
As 2022 comes close to an end, we want to celebrate this amazingly hopeful year with YOU! Please join us for coffe and treats at a casual end-of-year get together!... Read More »
Please join us for a Chapter Meeting and Holiday Party! Light refreshments and beverages will be provided. Researchers from the Avidity Team... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, you're invited to come dressed in Zoom-worthy holiday apparel, with favorite seasonal libations... Read More »
Tuesday, December 13th Join us for the last FSHD Radio Show of 2022! For this special episode, join Tim and FSHD Society's CEO, Mark Stone as they discuss all that... 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... Read More »
1:00 pm ET | noon CT | 11:00 am MT | 10:00 am PT | 18:00 GMT | 19:00 CET Everyone in the FSHD world has a role to play... 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... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT In the December “Feeling Fit” sessions, Frank Hanley will introduce several qigong exercises 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... 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... 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... 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... Read More »
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... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will continue the conversation that we started last month... 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... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Have you experienced pain as part of your FSHD? What has helped? What are your... Read More »
Tuesday, January 10th 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... 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... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Lonwabo Nene Join us this month as Lonwabo Nene explains his physical rehab journey... Read More »
Tuesday, January 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... Read More »
We hope you will join us for the first Chapter meeting of the year! Reconnect with old friends, and meet some new folks from our region. This will be a... Read More »
Dear friends, Welcome to the "Third Thursday" 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... Read More »
Saturday, January 21, 2023 10:00-11:00am Eastern Time Join us via Zoom HERE We hope you will join us for the first Chapter meeting of the year! Reconnect with old... Read More »
Chapter Meeting Sunday, January 22, 2023 1:00pm - 3:00pm Pacific Time Stanford University, Center for Academic Medicine, Grand Rounds Room 125 453 Quarry Road, Palo Alto, CA 94304 Our January... 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... 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... Read More »
Thursday, January 26th 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... Read More »
12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Lonwabo Nene Join us for Q&A and discussion to follow up on Lonwabo Nene's... Read More »
8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT What does your partner need from you or someone who helps with their care? This came... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Let’s learn from each other by sharing great tricks for... Read More »
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... 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 physiotherapist Ulrike Uta of the... Read More »
February 11, 2023 2:00pm – 4:30 pm Join us for this informative discussion about trials while sipping on a special pre-Valentine’s Day cocktail (N/A available) celebrating FSHD. Have you... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will be joined by crisis counselors Kylee Helmke and Andrea Morales to... Read More »
Tuesday, February 14th 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... Read More »
Learn about the FDA's recent fast track designation for Avidity's FSHD therapeutic here. 1:00 pm ET | noon CT | 11:00 am MT | 10:00 am PT | 18:00 GMT... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT | 18:00 UK | 19:00 CET Dr. Rita Perlingeiro Our webinar speaker is Dr. Rita... Read More »
Dear friends, Welcome to the "Third Thursday" 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... Read More »
Dear Friends, Please mark your calendars for a get-together in Tampa! We'll be meeting up at the True Food Kitchen, and if the weather is nice enough, we'll enjoy our... Read More »
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,... 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... Read More »
Thursday, February 23rd 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... 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 Ulrike Uta will join us to... Read More »
Saturday, February 25, 2023 10:00am ET Please join us for our first Chapter meeting of 2023! Grab a cup of coffee and join us for a casual discussion and Q&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... 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... 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... Read More »
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... 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 For people living with FSHD who are... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will be joined by crisis counselors Kylee Helmke and Andrea Morales to... Read More »
Tuesday, March 14th 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... Read More »
1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Nizar Saad, PhD Nizar Saad, PhD is an assistant professor at the Center for Gene... Read More »
Dear friends, Welcome to the "Third Thursday" 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... Read More »
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,... Read More »
Thursday, March 23rd 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... 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 For people living with FSHD who... Read More »
English
Spanish
French
German
Italian
Dutch
Russian
Chinese (Simplified)
Japanese
Hindi
Hebrew
Portuguese
