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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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
Connecticut Connections Reunion Wednesday, May 31st, 2023 7pm ET | 6pm CT | 5pm MT | 4pm PT Via Zoom: https://us02web.zoom.us/j/3648329628?pwd=RjAxdHFCanU1RzNtQ0Fnek4zY1hidz09 Dear friends, Please join us for a virtual reunion […]
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 […]
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 what we call "Instrumental ADL’s […]
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 and Bill Herzberg Last month […]
Join us for an informal breakfast/brunch gathering! Saturday, June 10th, 2023 - 11:00am ET Symposium Cafe: 3055 Dundas St W in Mississauga Dear Ontario friends, Come join your fellow Ontario FSHDers for […]
Bay Area Chapter Meeting Sunday, June 11, 2023 1:00-3:00 pm PT Hoover Pavilion, Room 208 Stanford Campus Quarry Road, Palo Alto Let's meet together in-person (or Zoom) so that we can catch up […]
Tampa Chapter Gathering Sunday, June 11th, 4pm True Food Kitchen 3645 Midtown Dr, Tampa, FL 33607 Dear friends, Please come out and join us for another great get-together of […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Change of topic! Instead of Happy Hour, this month we will enjoy another Movie Night […]
Tuesday, June 13th 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 […]
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 […]
New York City/NJ - Area Chapter Tuesday, June 13, 2023 7:00pm ET via Zoom We hope you can join us for a virtual chapter meeting! We will be discussing […]
SAVE THE DATE! The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. World renowned clinicians, medical researchers, pharmaceutical […]
Celebrate World FSHD Day & Father’s Day at the ballpark with the PNW Chapter! Saturday, June 17, 2023 6:00pm Cheney Stadium, Tacoma Tacoma Rainiers vs. Albuquerque Isotopes After you register, […]
Join us for the annual World FSHD Day to raise awareness of FSHD globally over social media on June 20th! Learn about the orange slice selfie campaign and download our […]
Hello Friends! Please join us on June 20th, 2023 at 6pm as we celebrate World FSHD Day together! WHERE: Tap & Barrel - Convention Centre : 876-1055 Canada Place, Vancouver, […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for a conversation with Sharon F. Terry, President and CEO of Genetic Alliance, […]
Join us for the Atlanta Chapter Watch Party as the King & Queen Buildings light up orange in honor of World FSHD Day! Tuesday, June 20, 2023 7:30pm ET El […]
Western PA Chapter Meeting Wednesday, June 21 6:30 – 8:00pm ET Please join us for a virtual meeting of the Western PA Chapter to chat among ourselves, plan our family […]
Thursday, June 22nd 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 […]
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 Frank Hanley will lead today's session with […]
Idaho Chapter Meeting Thursday, June 22, 2023 6:30pm MT Louie's Pizza and Italian Restaurant at 2500 E Fairview Ave, Meridian, ID 83642 Join us for dinner! This will be an […]
Please join us on Saturday June 24th for a casual breakfast get-together, and for our first in-person meeting of the Alberta Chapter! WHAT: Let us treat you to breakfast, hear some […]
11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT This Saturday's theme is "Improving Your Quality of Life with FSHD." We'll share information and […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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. […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
Tuesday, August 8th This month, Tim has the pleasure of sitting down with Ryan Levinson, a world traveler and legend in the FSHD Community. Ryan's remarkable story makes this an […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Jenny and Tony Teel Join us for an insightful discussion with special guests Jenny and […]
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 […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT For many of us, communing with Nature is an important contributor to wellbeing, so we […]
Mountain State Chapter Meeting Tuesday, August 15, 2023 5:30 pm - 6:30 pm PT | 6:30 pm - 7:30 pm MT Join us for a special chapter meeting for all Mountain […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Many of you have asked us to periodically update you on the advocacy initiatives the […]
DATE: Saturday, August 19, 2023 TIME: 5:00 pm - 7:00 pm PT WHERE: Mimi's Cafe, 2029 Alta Arden Expy, Sacramento, CA 95825 Join us for an in-person get-together where you will have the chance […]
CenTex Virtual Chapter Meeting Monday, August 21, 2023 7:00pm – 8:00pm CT Join us as we chat about the upcoming Walk & Roll to Cure FSHD and the FSHD 360!
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 […]
Thursday, August 24th This month, Max Adler, a long-time friend of the FSHD Society, sits down with Tim to talk about the LA Walk & Roll. We can't wait to […]
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 Ruth Hereford from the Midlands Muscular Dystrophy […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Megan McNiff Our speaker is Megan McNiff, a research associate from the John Walton Muscular Dystrophy […]
