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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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 Chaplain Deb Calhoun The Women on Wellness September 6th discussion […]
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” […]
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, […]
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, […]
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 […]
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 […]
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 […]
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 […]
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 […]
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, […]
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 […]
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 […]
Los Angeles Walk & Roll September 17, 2023 Registration 8am Woodley Park, 6076 Woodley Ave, Encino, CA 91316 Register to “walk or roll” today! Invite your family, friends, club members, […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT The community has shown interest in learning more about resources for modified vehicles and accessible […]
Western PA Drum & Roll Planning Meeting (Virtual) Wednesday, September 20, 2023 6:30pm – 7:30pm ET Join us as we plan and discuss the upcoming Drum & Roll!
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Maaike Pelsma Join Maaike Pelsma, a pediatric physical therapist, to learn about shoulder dyskinesia in children […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our […]
10:00 AM ET | 9:00 AM CT | 8:00 AM MT | 7:00 AM PT Tune in as FSHD Radio podcast host, Tim Hollenback, interviews Walkers and Rollers during our […]
Columbus Walk & Roll Saturday, September 23, 2023 9:00 am Coffman Park Pavilion 5200 Emerald Pkwy Dublin, OH 43017 Register to “walk or roll” today! Invite your family, friends, club […]
Intermountain Walk & Roll Saturday, September 23, 2023 9:00am Registration Canyon Rim Park, East Pavilion, Millcreek UT Register to “walk or roll” today! Invite your family, friends, club members, neighbors, […]
St. Louis Walk & Roll Saturday, September 23, 2023 9am-Registration/10am-Walk&Roll Hawk Ridge Park/Zachary's Playground, 8392 Orf Road, Lake Saint Louis, MO 63367 Register to “walk or roll” today! Invite your […]
11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT How does nutrition impact the symptoms and progression of FSHD? This week, the group will […]
Virginia Walk & Roll CANCELED With the impending storm this weekend, we have made the difficult decision to cancel Saturday's Walk & Roll. Thank you so much to everyone who […]
Mid-Atlantic Walk & Roll CANCELED With the impending storm this weekend, we have made the difficult decision to cancel Saturday's Walk & Roll. Thank you so much to everyone who […]
Minnesota Walk & Roll Sunday, September 24, 2023, 8:00 am Normandale Lake Bandshell Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation […]
Bay Area Walk & Roll Sunday, September 24, 2023 • 11:00 am Sharon Park Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or […]
West Michigan Walk & Roll Mulligan's Hollow Lodge, 600 Y Drive, Grand Haven, MI. 49417 Sunday 9/24. Registration Opens: 2pm; Walk Begins: 2:30pm. Register to “walk or roll” today! Invite your […]
North Texas Walk & Roll Sunday, September 24, 2023 2:00 p.m. registration Warren Sports Complex 7599 Eldorado Parkway, Frisco, TX 75033 Register to “walk or roll” today! Invite your family, […]
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, September 28th 14:00 PM CET | 13:00 PM UK | 8:00 AM ET | 7:00 AM CT | 6:00 AM MT | 5:00 AM PT Earlier this month, Fulcrum […]
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 us for our second session of […]
CenTex Walk & Roll Sunday, September 30, 2023 8:00 am Champion Park Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to […]
San Diego Walk & Roll Saturday, September 30, 2023 Registration starts at 8:00 a.m. Harbor Island Park, 1875 Harbor Island Dr., San Diego, CA 92101 Register to “walk or roll” […]
Kansas City Walk & Roll Saturday, September 30, 2023 Macken Park Festival Shelter Registration 9:00am, Opening Ceremonies 9:45am, Walk Starts 10:00am Register to “walk or roll” today! Invite your family, […]
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 Adaptive cooking and adaptive eating will be our topic this […]
New England Walk & Roll Saturday, October 7, 2023 11:00am Check In Optum Roofdeck, 1325 Boylston St., Boston MA 02215 Register to “walk or roll” today! Invite your family, friends, […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT With all the floods, hurricanes, fires, and earthquakes in the news lately, we're reminded of […]
Tuesday, October 10th This month, we welcome actress, dancer, and choreographer Donna Russo. A performer with FSHD and Turner Syndrome, Donna has graced the stage in various productions, including Alvin […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Our guest is Don Burke, an FSHD Society member who recently retired from a high-impact […]
9:00 a.m. US Pacific Time doors open | 10:00-3:00 p.m. US PT conference sessions The FSHD Society, in collaboration with Friends of FSH Research and the University of Washington Seattle, […]
Atlanta Walk & Roll Sunday, October 15, 2023 Registration at 10:00 a.m. Chattahoochee Nature Center, 9135 Willeo Rd, Roswell, GA 30075 Register to “walk or roll" today! Invite your family, […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT The end of September saw the first-ever workshop focused solely on pediatric FSHD. The workshop, […]
