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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 […]
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 […]
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 […]
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! […]
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 […]
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. […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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, […]
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 As Rita Lynn has had to cancel […]
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 […]
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 […]
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 welcome back Trish Kean, who will […]
8:30PM ET | 7:30PM CT | 6:30PM MT | 5:30PM PT Saturday, April 13, 2024, 6:30pm MT at the Boise State University Special Events Center Raise money to fund research […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Dani Liptak If you are experiencing some level of disability from your FSHD symptoms (or […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT When a child has a progressive, disabling condition like FSHD, the transition to adulthood and […]
With Jennifer Egert, PhD, and patients and family members 19:00 CET | 18:00 UK | 1:00 PM ET | 12:00 PM CT | 11:00 AM MT | 10:00am PT This […]
In this episode, FSHD Straight Talk host Tim Hollenback speaks with Trish about life during and after diagnosis. In this candid conversation Trish (last name withheld for privacy) and Tim […]
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 will lead today's session on […]
9:00 a.m. US Central Time doors open | 10:00-3:00 p.m. US CT conference sessions Save the date!! The FSHD Society, in collaboration with the University of San Antonio Health Science […]
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 […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's discussion will focus on promoting a positive outlook. […]
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 we have the pleasure of […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Chaplain Deb Calhoun Many of us procrastinate when it comes to planning for the future, […]
In this laid back episode, Tim discusses music, San Diego chapter program involvement, and staying strong in the face of slow progression with Callum Arras. Bridging their nearly 20 year […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Josie Godfrey There is great progress toward new medicines for FSHD, but even when a drug […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month we'll learn about kratom, a medical herb, from Young Adults group co-moderator Chandler […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT CHANGE NOTICE: Instead of recapping Hill Day, we welcome our esteemed guest, Heloise Hoffmann. Heloise […]
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 is part two of this month's […]
When a busy schedule, family needs, and chronic pain limit your bandwidth, committing to regular exercise and healthy eating can be hard. In this episode of FSHD Straight Talk, host […]
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 […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's conversation topic is "How to keep a meaningful […]
4:00-7:00pm ET | 3:00-6:00pm CT | 2:00-5:00pm MT | 1:00-4:00pm PT Pacific Northwest Day at the Ball Park Sunday, June 9, 2024, 1:00 pm - 4:00 pm PT WHERE: Cheney […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our guest this month is Diane Corrinne Buck, Gourmet Food Store Owner & Cooking enthusiast. […]
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who […]
Virtual registration open until June 9th 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, […]
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 Are you a ‘Mouth Breather’? Do you […]
CONNECT 2024 will be hosted on June 15-16 in Denver, Colorado. CONNECT brings together world leaders in FSHD research, patient care, advocacy, education, and support. Held every two years, FSHD […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT We are cancelling our June meeting because the Young Adults group will be recovering from […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT We are cancelling this month's meeting because we will be very busy with FSHD Connect. […]
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 […]
1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT This World FSHD Day join the Avidity Biosciences team as they share an update on the […]
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who […]
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 In PART 2 of the June “Feeling […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's Wellness hour features In Home Preferred, an innovative company run and managed by […]
In this episode of FSHD Straight Talk, host Tim Hollenback talks with George Pollock, longtime member of the FSHD Society Board of Directors and a powerful advocate FSHD treatments. Join […]
First Wednesday of every month* 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT *Note we have changed the date to July 10 due […]
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 In PART 3 of the “Feeling Fit” […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month, we invite everyone in the Young Adults community to join a conversation about […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This year's FSHD Connect, held on June 15-16, had activities and breakouts dedicated to pediatric […]
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 rpt The foods you eat impact your disease and […]
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who […]
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 Our featured presenter, Andrea Jaworek, PT, is […]
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 […]
7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Team Captain Rally & Social Hour Wednesday, July 31st Join us for our annual Team Captain Rally where we […]
First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We'll be discussing a variety of topics that have been […]
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 Physical therapy and fitness training can both […]
5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Christina's World, by Andrew Wyeth Living with FSHD can stir complex emotions that are not […]
Meet Mary Beth McCabe, the passionate Captain of Team McCabe and the NJ Shore Walk & Roll Leader. As host Tim Hollenbeck drums up support for the 2024 Walk & […]
Good Bad Things Theatrical Premiere For nearly a year, we’ve been following the journey of "Good Bad Things," and now, the award-winning film starring Danny Kurtzman, who lives with FSHD, […]
The Muscle to Keep Life Moving™ Monday, August 19, 2024 9:00am-6:00pm ET The Cape Club of Sharon: 25 Tiot St, Sharon MA 02067 The FSHD Society is pleased to partner […]
8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT We're excited to learn that Avidity will begin recruiting for Cohort C of its clinical […]
8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Using real FSHD patient food records, we will explore the journey to better nutrition for […]
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 Jhana Wilson, PT Physical therapy and exercise […]
In this episode, host Tim Hollenback talks with Dan Wilson, a retired respiratory therapist and NASCAR enthusiast. In addition to discussing resources for home safety and building support networks to […]
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 […]
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 BetterLife FSHD We are thrilled to announce the premiere […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who […]
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 Join Trish Kean for a session of […]
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 […]
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 […]
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 […]
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who […]
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 UPDATE: This session is cancelled because Frank […]
