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 »
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 »
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 »
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 »
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 »
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 »
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 »
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 »
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 »
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 Our topic this month is continuing last month's talk about How do we take care of... 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 month we will continue our conversations about Challenges (and... 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 »
March 9 - 26 Brew Quest – A Quest to Cure FSHD Fundraising for FSHD Society Discover new breweries around the Kearny Mesa/Miramar/Mira Mesa area while supporting our organization. At... 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 “FSHD is always attacking me… it never... Read More »
Please join us for the first Alberta Chapter Meeting (virtual) on Sunday, March 12th at 10:00am MT via ZOOM! Please RSVP! Come and meet the Chapter Co-Directors, Jennie and Karen Camarta, and... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we will discuss a film, I Didn’t See You There. The idea is... 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 »
7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young... Read More »
Join us for the first official meeting as the new BC Chapter of the FSHD Society! We will meet virtually on Wednesday, March 15th 2023 at 7pm PT. Please RSVP to... 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 »
Come meet us! East TN Chapter Meeting Tuesday, March 21, 2023 5:00pm - 6:00pm Eastern Time Cedar Bluff Branch Library Cedar Bluff Meeting Room 9045 Cross Park Drive Knoxville, TN... 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 “FSHD is always attacking me… it never... Read More »
1:30 PM ET | 12:30 PM CT | 11:30 AM MT | 10:30 AM PT Nizar Saad, PhD Nizar Saad, PhD is an assistant professor at the Center for Gene... 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... Read More »
Come meet us! Greater Philadelphia Chapter Meeting Saturday, March 25, 2023 10:00am - 12:00pm Eastern Time Wissahickon Valley Public Library 650 W Skippack Pike Blue Bell, PA 19422 Or via... Read More »
Chapter Happy Hour Saturday, March 25, 2023 11:30am - 1:30pm CT Down South Kitchen & Bakery 6500 Cascades CT Ste. 100 The Colony, TX 75056 Dear Friends, Please mark your... Read More »
Chapter Happy Hour Sunday, March 26, 2023 3:30pm - 5:30pm CT Johnny Tamales Cantina 4647 East Sam Houston Pkwy S Pasadena, TX 77507 Please mark your calendars for the Houston-area... 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 »
Wednesday, March 29th, 2023 8pm ET | 7pm CT | 6pm MT | 5pm PT Via Zoom: Invite Link Invite Link https://us02web.zoom.us/j/3648329628?pwd=RjAxdHFCanU1RzNtQ0Fnek4zY1hidz09 Dear friends, It’s been such a long time... Read More »
Chapter Happy Hour Saturday, April 1, 2023 3:30pm - 5:30pm CT District Kitchen & Cocktails (Anderson Lane Location) 7858 Shoal Creek Blvd, Ste. B Austin, TX 78757 Please mark your... Read More »
Please JOIN US for our first Chapter meeting and social gathering of 2023, and to personally welcome our new Chapter Director, Kurt Spiegel! Sunday April 2nd, 2023: 3pm - 5pm Lariat... 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 »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is all about wheelchairs. How do you know when you need... Read More »
Tuesday, April 11th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD... Read More »
7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young... Read More »
UPDATED: Date changed this month because of Passover 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we continue our conversations about... Read More »
Nevada Virtual Chapter Meeting 7:00 PM to 8:00 PM PT Join us on Zoom as we introduce Leslie Truman as our new Nevada Chapter Director! RSVP with the link below... Read More »
Wednesday, April 12th, 2023 7pm ET | 6pm CT | 5pm MT | 4pm PT Via Zoom: https://us02web.zoom.us/j/83644567187?pwd=MnhSd0lPTVdUQlZYYzhhQ0VCdEI1UT09 Dear friends, I’d like to invite you join me for a lively... 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 “During a check-up, the doctor asked me... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Special Needs Planning Beyond One Day at a Time As a special needs family, living... 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... Read More »
Northeast Florida Chapter Brunch Saturday, April 22nd; 11am - 2pm Noura's Cafe, 1533 University Blvd W, Jacksonville FL 32217 Dear Friends, We hope you can join us for Saturday, April... Read More »
This event has been canceled.
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 »
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 NOTE DATE CHANGE FROM April 27 to... 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 »
For this All-Texas Chapter Meeting we will be joined by guest Debra Kerber from Easy Access Travel. She'll be giving us tips on accessible travel! RSVP below.
Thursday, April 27th On the 4th Thursday of every month, look for a new episode of FSHD Radio: Hot off the Press. Each month we will bring you a short-form... Read More »
Idaho Talent Fest 2023 - Saturday, April 29th Join us April 29th at the Boise State University's Special Events Center for the 3rd Annual Idaho Talent Fest to Cure FSH Muscular Dystrophy presented... 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 Fatigue is one of the biggest challenges we face, and... Read More »
Hello BC Friends! Please join us for a virtual meeting on May 3rd, 2023 at 6pm PT! Our guest speaker will be Dr. Jamshid Arjomand, Chief Science Officer at the... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT In October 2022, Roche/Genentech shared with us plans to initiate a new trial called MANOEUVRE. This... Read More »
9:00 a.m. US ET doors open | 10:00-4:00 p.m. US ET conference sessions The FSHD Society, in collaboration with the University of Rochester Medical Center, is hosting this year’s Rochester... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT In the last few months, a raft of articles have been published on the topic... Read More »
Tuesday, May 9th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD... Read More »
7:00 pm ET | 6:00 pm CT | 5:00 pm MT | 4:00 pm PT FSHD Young Professionals is a social and support group focused on encouraging and empowering young... 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 Mitch Wade This month, we're excited to... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Kiera Berggren Children with early-onset FSHD often struggle with speech and swallowing due to weak... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Dr. Bakri Elshiekh We want to make sure that newcomers to the FSHD community have an... Read More »
Join us virtually as we launch our new Michigan Chapter! Come to meet our new Chapter Director, Cassie Harris, to get to know one another, and to find out about... 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... 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 »
Thursday, May 25th On the 4th Thursday of every month, look for a new episode of FSHD Radio: Hot off the Press. Each month we will bring you a short-form... 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 Donna Russo has been promoting adaptive yoga... Read More »
North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us for a virtual chapter meeting. This will be our time to come together - where Connections, Hope, Healing, and Awareness... Read More »
11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT Join us for a virtual escape room! For this Saturday meeting, we’ll solve puzzles together... 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 »
