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 »
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,... Read More »
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... Read More »
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... Read More »
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... Read More »
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... Read More »
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,... Read More »
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... Read More »
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... Read More »
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... Read More »
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... Read More »
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... Read More »
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... Read More »
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... Read More »
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,... 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 »
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... 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 us for our second session of... Read More »
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... Read More »
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”... Read More »
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,... Read More »
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... Read More »
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,... Read More »
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... Read More »
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... Read More »
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... Read More »
19:00 PM CET | 18:00 PM UK | 13:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Jackie O'Doherty is a fitness trainer who works... Read More »
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,... Read More »
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,... Read More »
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,... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Michaela Walker NOTE: Date has been changed from July 20 to October 19. MOVE and MOVE+... Read More »
Thursday, October 26th Today's program features the FSHD Society's Anna Gilmore, who oversees the Society's new initiative, FSHD Navigator. This program will provide superior in-person and web-based assistance to individuals... Read More »
19:00 CET | 18:00 UK | 1:00 PM ET | NOON CT | 11:00 AM MT | 10:00 AM PT Jackie O'Doherty is back to answer your questions about her... Read More »
Putting Fore a Cure Saturday, October 28, 2023 Wildhorse Golf Club Henderson, NV 7:30 am Shotgun Start Mark your calendars for Saturday, October 28th, when we will be holding our... Read More »
11:00 am ET | 10:00 am CT | 9:00 am MT | 8:00 am PT Managing Symptoms and Improving Quality of Life with Tara Hill and Glen Denehie FSHD Young... Read More »
New Jersey Shore Walk & Roll RESCHEDULED to Saturday, October 28, 2023 • 10:00 am Seaside Heights Boardwalk @ Heiring Ave. Register to “walk or roll” today! Invite your family,... 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 For people living with FSHD who are... 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're talking about women and wheelchairs: when to... Read More »
Please note, due to Halloween, October's CarePartner Hour has been moved to Wednesday, November 1, 2023. The time and link will remain the same. 8:00 – 9:00 PM ET |... Read More »
Drum & Roll to Cure FSHD Sunday, November 5, 2023 • 1:00 pm National Aviary, The Garden Room, Pittsburgh, PA Register for the 2023 Western Pennsylvania Drum & Roll today!... 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 »
9:00 a.m. US Eastern Time doors open | 9:30 a.m. - 3:30 p.m. US ET conference sessions The FSHD Society, in collaboration with the Ohio State University and Nationwide Children's... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT All of us consult "Dr. Google" when we have health questions, but how do we... Read More »
Magic for a Cure 6pm Cocktails * 7pm Dinner * 7:45pm Magic The Pointe at Naples Bay Resort: 1500 Fifth Avenue South Naples, FL 34102 Join us for an evening... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us as June Kinoshita, Senior Director of Research & Education, answers your questions about... 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 »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Eva Chin, PhD Join us for a conversation with Eva Chin, PhD, Executive Director of... Read More »
Join us for FSHD Radio’s first-ever Thanksgiving Special as we come together and give thanks for the strength and resilience that make our community shine. This year, we want to... 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 »
Tune in to a special FSHD Radio episode! Emma Weatherley, Managing Director of FSHD Global, joins Tim to share exciting news: Michael Dickson of the Seattle Seahawks is raising FSHD... Read More »
FSHD is in the national spotlight! Emma Weatherley, Managing Director of FSHD Global, joins Tim to share exciting news: Michael Dickson of the Seattle Seahawks is raising FSHD awareness. The... Read More »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our guest this month is Loralei Thornburg, MD, professor of... Read More »
Dancing with differences: A Moving Celebration of the Season 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a joyous and... Read More »
Tuesday, December 12th In this episode, Tim chats with Michael Osborne, a fellow Milwaukeean and baseball coach living with FSHD. Michael and Tim share the story of how they met... 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 us this month for a session... Read More »
Wellness Hour Monthly Meeting 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT The Wellness Hour is open to everyone in the FSHD community.... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Back by popular demand, Dr. Jen Egert will lead us through a mindfulness meditation session.... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Carden Wyckoff This month we will host a roundtable conversation with young adults with FSHD.... Read More »
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Dr. Nicholas Johnson Every year, we bring you an update on therapy development for FSHD. What... 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 »
Thursday, December 28th 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 »
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We're starting the year off by discussion about spreading our... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We're starting the new year off with an ice breaker online card game. Kind of... 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 We kick off 2024 with something new... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT In some individuals with FSHD, surgery to anchor the shoulder blades to the ribcage can... Read More »
Join host Tim Hollenback and special guest Chelsea Moeller for a discussion of living with FSHD, from diagnosis to trial participation. Tim also teases some updates to FSHD Radio. On... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT For parents, figuring out how to advocate in schools for a child with a disability... Read More »
With Nicol Voermans, MD PhD, and Nathaniël Rasing, MD 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT While... Read More »
Join host Tim Hollenback for a special conversation with Marisa Spain. Marisa, known for Disabled in Nature, her YouTube channel and Instagram, discusses living with Early On-Set FSHD, barriers 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 We kick off 2024 with something new... 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 Thanks to our members for responding to our annual survey!... 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 This month, Frank Hanley will present a... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will discuss Ayurvedic medicine, the ancient Indian system of integrative, holistic medicine.... Read More »
Tuesday, February 13th In this month's Community Profiles episode, Tim sits down with Jane Nemke, an accredited International Association Color Consultant and the founder of Designs to Thrive. Jane shares... Read More »
Breathing with FSHD, Andrea Klein 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00 AM PT Today’s webinar discusses how... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Please join Robert Ro and the Young Adults group for a discussion on Preventative Care... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This month, we'll be sharing news from the FSHD Society's annual Volunteer Leadership Summit in... 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 We review the hip flexor exercises from... Read More »
Tuesday, February 27th We’re thrilled to share a conversation with Danny Kurtzman and Shane Stanger, the duo behind Good Bad Things! Their film is currently making waves (and taking home... 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 Join us for a presentation on menopause and women with... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, we welcome Isaac and Ora Prilleltensky, who literally wrote the book on How... Read More »
Tuesday, March 12 Tim will be joined by Lonwabo Nene, scriptwriter, filmmaker, and FSHD advocate from South Africa. If you've seen his engaging sessions on Feeling Fit, you know Lonwabo... 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 »
9:00 a.m. Mountain Time doors open | 10:00-3:00 p.m. MT conference sessions The FSHD Society, in collaboration with FSHD Canada Foundation and the University of Calgary, AB, Canada, is hosting... Read More »
7-8pm ET | 6-7pm CT | 5-6pm MT | 4-5pm PT Texas Virtual Happy Hour, Sunday, March 17, 2024 TIME: 6:00 pm - 7:00 pm CT WHERE: Virtually via Zoom... Read More »
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Many of us have tried or are curious about CBD and medical marijuana to treat... Read More »
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT As we plan the 2024 FSHD Connect conference--the largest gathering for patients, families, clinicians, and... Read More »
Finding reliable health information on the Internet, with Tina Griffin 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT... Read More »
In this episode of Straight Talk, Tim is joined by David Rubin, NYC Chapter Leader. After a successful career in business and accounting, David discusses how he found new passions,... 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 As Rita Lynn has had to cancel... 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 discussion on what to... Read More »
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month, Rick Whitehead will share his experience having surgery to reinforce weak abdominal muscles... Read More »
