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 »
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... 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 Our topic this month is what we call "Instrumental ADL’s... 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 and Bill Herzberg Last month... Read More »
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... Read More »
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... Read More »
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... Read More »
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... Read More »
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... 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 »
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... Read More »
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... Read More »
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,... Read More »
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... Read More »
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,... Read More »
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,... Read More »
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... Read More »
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... Read More »
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... 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 Frank Hanley will lead today's session with... Read More »
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... Read More »
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... Read More »
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... 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 »
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 the 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 will continue our robust discussion on instrumental... Read More »
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... Read More »
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... Read More »
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... Read More »
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.... 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 this month's guest, Ryan Levinson, who... Read More »
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... Read More »
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... 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 »
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 »
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 the month for a virtual chapter meeting. This will be our time to come together... Read More »
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... 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 Rita Lynn (far right) with her family... Read More »
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... 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 Beth Babich is moderating this month's Women on Wellness around... Read More »
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... Read More »
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... Read More »
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... Read More »
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... 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 Rita Lynn (far right) with her family... Read More »
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... Read More »
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... Read More »
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... Read More »
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... Read More »
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... Read More »
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... 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 Ruth Hereford from the Midlands Muscular Dystrophy... Read More »
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... Read More »
San Diego Virtual Chapter Meeting Thursday, August 24, 2023 6:00-7:00 pm PT Register below for our upcoming Walk n Roll Committee meeting. By this date you should be signed up online... Read More »
11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT Are you an artist with FSHD? Join us for a discussion about the joys and... Read More »
Connecticut Chapter Annual Luncheon Saturday, August 26, 2023 12:00pm – 2:00pm ET On the Border Mexican Grill & Cantina 1519 Silas Deane Highway Rocky Hill, CT 06067 Join us to... 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 »
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 the month for a virtual chapter meeting. This will be our time to come together... Read More »
British Columbia Walk & Roll Celebration: Tuesday September 5th, 6pm (check-in starts at 5:30pm) The Pint Public House, 455 Abbott Street, Vancouver, BC Register to “walk or roll” today! Invite... 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 Chaplain Deb Calhoun The Women on Wellness September 6th discussion... Read More »
Alberta Walk & Roll Saturday, September 9, 2023 Registration at 8:30 a.m. TENTATIVE - RiverWalk Plaza: 618 Confluence Way SE Calgary AB T2G 0G1 Canada Register to “walk or roll”... Read More »
Colorado Walk & Roll Sunday, September 10, 2023 Registration & Check-in 8am Philip S. Miller Park Amphitheater - Castle Rock, CO Register to “walk or roll” today! Invite your family,... Read More »
Pacific Northwest Walk & Roll Sunday, September 10, 2023 12:00 PM Cockrell Cider, 6613 114th Ave Ct E, Puyallup, WA. 98372 Register to “walk or roll” today! Invite your family,... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT September is National Fall Prevention month . Who better to talk about fall prevention than... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Julie Cohen Mark your calendar and join us for a discussion on genetic counseling and... Read More »
Tuesday, September 12th Jenny and Tony Teel This month, Tim talks with guests Jenny and Tony Teel! This dynamic married couple runs a popular YouTube channel where they share valuable... 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 September marks the one-year anniversary of the... Read More »
Arizona Walk & Roll Saturday, September 16, 2023 • 7:30 am Scottsdale, AZ Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation... Read More »
Ontario Walk & Roll Saturday, September 16th 2023 9:00 am check in Lake Aquitaine Park - Mississauga, ON Register to "walk or roll" today! Invite your family, friends, club members,... Read More »
Chicago Walk & Roll Saturday, September 16th 2023, 10:00 am Citizens Park, Robert Soule Amphitheater Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates... Read More »
NE Florida Walk & Roll Saturday, September 16, 2023 Arrival & check-in starting at 5pm. Burgers and reception 5:30 - 6:30pm, Baseball game starts at 6:35pm. Jacksonville Jumbo Shrimp Baseball... Read More »
