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 talk about the challenges of making and keeping friends, in light of our many mobility challenges and potential location changes AND how to cope with the jealousy that may creep up... Read More »
2024 Alberta Walk & Roll to Cure FSHD Saturday, September 7, 2024 9:00am at the Riverwalk Plaza, Calgary AB Join us for the second annual Alberta Walk & Roll to Cure FSHD. Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers... Read More »
2024 Sacramento Walk & Roll to Cure FSHD Saturday, September 7, 2024 Registration opens at 9:00am, the Walk starts at 10:00am California State Capitol: 1315 10th St, Sacramento, CA 95814 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be... Read More »
2024 Northeast Florida Walk & Roll to Cure FSHD Saturday, September 7, 2024 Check-in begins at 8:30am, walk begins at 9:00am Jacksonville Zoo & Gardens Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page... Read More »
2024 Colorado Walk & Roll to Cure FSHD Sunday, September 8, 2024 Check In begins at 8:00am and the Walk begins promptly at 9:00am Phillip S. Miller Park - Amphitheater, Castle Rock, CO Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our speaker this month addresses an important topic that affects many in our community. Elizabeth Pendo is the Kellye Y. Testy Professor of Law and Senior Associate Dean for Academic Affairs at the University of Washington School of Law, and... Read More »
Join host Tim Hollenback and guest Brittany Lauro for this honest conversation about love, relationships, and FSHD. A Team Captain and volunteer for the Sacramento Walk & Roll, Brittany is a world traveler who turned to photography as FSHD affected her ability to walk and hike. In addition to discussing the importance of spousal support,... 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 Chris Haven Chris Haven, from the Pacific Northwest chapter, will share her experiences working out with Alex Walker, a personal trainer and strength coach. She will share a video and discuss her... Read More »
New England Virtual Chapter Meeting Thursday, September 12, 2024 at 7:00 PM Meeting Agenda: Walk Leader, Lexi Pappas, will briefly talk about the Walk & Roll taking place on 9/22 Regional Director, Jenny Gast, will give an update on the 360 Event taking place on 11/2 Opportunity to connect and network with each other RSVP... Read More »
2024 Columbus Walk & Roll to Cure FSHD Saturday, September 14, 2024, 10:00am at Coffmann Park Pavilion Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From... Read More »
2024 Utah/Intermountain Walk & Roll to Cure FSHD Saturday, September 14, 2024, 3:00-5:00pm Canyon Rim Park - East Pavilion, Millcreek, Utah Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a... Read More »
2024 Ontario Walk & Roll to Cure FSHD Saturday, September 14, 2024, 9:00am Lake Aquitaine Park, Mississauga, ON Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center.... Read More »
2024 Pacific Northwest Walk & Roll to Cure FSHD Saturday, September 14, 2024, 9:00am Owen Beach Pavilion, Tacoma, WA Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising... Read More »
2024 StL Walk & Roll to Cure FSHD Saturday, September 14, 2024 Memorial Park * Pavillion 1, 8600 Strassner Dr, Brentwood, MO 63144 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access... Read More »
2024 Kansas City Walk & Roll to Cure FSHD Saturday, September 14, 2024 Check-in begins at 10:00am, walk begins at 11:00am Location: Shawnee Mission Park, Shelter 5 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free... Read More »
2024 Idaho/Intermountain Walk & Roll to Cure FSHD Saturday, September 14, 2024, 10:00am Canyon Rim Park – East Pavilion, Millcreek, Utah Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a... Read More »
2024 British Columbia Walk & Roll to Cure FSHD Date and Time TBD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share... Read More »
2024 East Tennessee Walk & Roll to Cure FSHD Details TBD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social... Read More »
Bay Area Walk & Roll to Cure FSHD Sunday, September 15, 2024 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Christina's World, by Andrew Wyeth Living with FSHD can stir complex emotions that are not easy to bring to the surface or articulate. Zee Zelinski, who was diagnosed with the condition as a young child, explores her world through art,... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Mitch Wade, a fitness trainer from Portland, Oregon, is a legend in the FSHD community for his understanding of FSHD and results he has achieved with clients to help restore strength, range of motion, and function. No one can reverse... Read More »
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Insurance Coverage for Costly Rare-Disease Treatments As FSHD is entering the era of new therapies, Kelly Maynard, President and Founder and Amy Aikins, Director of Patient Access from the Little Hercules Foundation, will give... Read More »
Virtual Screening: Good Bad Things Missed seeing Good Bad Things in theaters? Get your tickets for a virtual screening this weekend. The film will be available from 6:00pm PST on Friday, September 20 through 11:59pm PST on Sunday, September 22. Streaming access costs $19.99; you will have 72 hours to watch the film. Help spread... Read More »
2024 Mid-Atlantic Walk & Roll to Cure FSHD Saturday, September 21, 2024, Registration opens at 10:30am Alpha Ridge Park, Marriotsville, MD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a... Read More »
2024 San Diego Walk & Roll to Cure FSHD Saturday, September 21, 2024, 8:30am Harbor Island Park, San Diego, CA Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art... Read More »
2024 North Carolina Walk & Roll to Cure FSHD Saturday, September 21, 2024 Registration starts at 10:00am and the Walk starts at 10:30am Goat Island Park - Large Shelter, 141 8th Ave, Cramerton, NC 28032 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you.... Read More »
2024 International Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media... Read More »
2024 Michigan Walk & Roll to Cure FSHD Sunday, September 22, 2024 Registration starts at 9:00am and the Walk starts at 9:30am Mulligan's Hollow Lodge - 600 Y Drive, Grand Haven, MI 49417 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who... Read More »
2024 Minnesota Walk & Roll to Cure FSHD Sunday, September 22, 2024 Location: Normandale Lake Bandshell, 5901 West 84th Street, Bloomington, MN Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to... Read More »
2024 New England Walk & Roll to Cure FSHD Sunday, September 22, 2024 Check-in at 10:00am, Walk starts at 10:30am Larz Anderson Park, 25 Newton St, Brookline, MA 02445 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given... Read More »
Virginia Chapter Monthly Virtual Meeting Tuesday, September 24th, 6:00pm ET Please join us for this casual, conversational monthly meeting. We look forward to catching up with everyone, sharing our updates and adventures, AND talking about our upcoming Walk & Roll to Cure FSHD on October 12th! Please RSVP using the button below to receive the... 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 Trish Kean for a session of Shaking Qigong. Shaking helps us to open up our joints or energy gates and meridians allowing the free flow of Qi (energy) in our body.... Read More »
2024 Chicagoland Walk & Roll to Cure FSHD Saturday, September 28, 2024 Registration opens at 9:00am and the event starts 10:00am Location: Robert Soule Amphitheater, Citizens Park, 511 Lake Zurich Rd, Barrington, IL 60010 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone... Read More »
2024 Long Island Walk & Roll to Cure FSHD Saturday, September 28, 2024 Eisenhower Park, 1899 Park Blvd., East Meadow NY 11554 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to... Read More »
2024 South Carolina Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social... Read More »
2024 New Jersey Shore Walk & Roll to Cure FSHD Sunday, September 29, 2024 At the end of the Seaside Boardwalk (Ocean Terrace & Hiering Avenue), Seaside Heights, NJ Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT UPDATE: We have reschedule for October 9 due to Rosh Hashanah falling on October 2 this year. After a move or new environment, we have to adjust to a new environment, including costs for personal... Read More »
Alberta Chapter Virtual Meeting All Canadian FSHD Community Members Welcome Wednesday, October 2, 2024 7:00pm - 8:00pm MT RSVP: https://go.fshdsociety.org/l/701273/2023-01-17/42q91r Following the disappointing news from Fulcrum, Neil Camarta will be presenting slides indicating how much is going on regarding FSHD treatments & muscle regeneration (especially here in Canada), letting people know that there are still... Read More »
First Friday of every month 8:00 p.m. ET | 7:00 p.m. CT | 6:00 p.m. MT | 5:00 p.m. PT Do you have any unique strategies to cope with the challenges presented by your FSHD? Perhaps you use your wheelchair as a fork lift, or have a grabber in every room of your house, or... Read More »
Central Texas Walk & Roll to Cure FSHD Saturday, October 5, 2024 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your... Read More »
2024 North Texas Walk & Roll to Cure FSHD Saturday, October 5, 024 Check-in opens at 1:00 PM, Walk & Roll begins promptly at 2:00 PM Location: Frisco Commons Park , 8000 McKinney Rd, Frisco, TX 75034 Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to... Read More »
9:00 CT doors open. Conference 10:00 a.m. to 4:30 p.m. CT Lunch will be provided Our 2024 FSHD 360 in the Kansas City area is hosted by Dr. Jeffrey Statland of the University of Kansas Medical Center and FSHD CTRN. This is a historic time in FSHD, with new treatments on the horizon. Do you... Read More »
Greater Philadelphia Chapter Meeting Saturday, October 5, 2024, 10:00am-1:00pm ET Location: Bryn Mawr Rehabilitation Hospital - 414 Paoli Pike, Malvern PA 19355 RSVP here: https://go.fshdsociety.org/l/701273/2023-02-14/42vknk Please join us for this meeting with Julie Brown, PT, DPT, NCS, ATP/SMS, who has worked with multiple FSHD patients and can offer guidance for individuals at different stages of... Read More »
