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Featured Featured Event Series 2025 FSHD 360s

Ontario FSHD 360

Burnhamthorpe Community Centre 1500 Gulleden Dr. Mississauga, ON L4X 2T7 CANADA Burnhamthorpe Community Centre 1500 Gulleden Dr, Mississauga, ON, Canada

Ontario FSHD 360 May 3 from 9:00 AM to 4:00 PM Co-hosted by FSHD Canada Foundation and FSHD Society Burnhamthorpe Community Centre 1500 Gulleden Dr. Mississauga, ON L4X 2T7 CANADA FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance […]

Featured Featured Event Series Women on Wellness

Women On Wellness: Parenting with a Disability

Zoom Virtual Meeting , United States

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We’re thrilled to welcome this month’s guest, Marjorie Aunos, PhD, a psychologist, researcher, professional speaker, and consultant on accessibility and inclusion. She teaches organizations to solution-find and build environments that are accessible, inclusive, and welcoming […]

Featured Featured Event Series Wellness Hour (Virtual Meeting)

Wellness Hour – Getting to know you

Zoom Virtual Meeting , United States

Conversations that Build the FSHD Community 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join the conversation, which will be inspired by questions drawn from David Brooks’ book How to Know a Person: The Art of Seeing Others Deeply and Being Deeply Seen and connect with others who […]

Featured Featured Event Series Everything Early Onset

Everything Early Onset – Netflix Night

NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT This month we're gathering to socialize and get to know one another better. Archer would love to chat about what […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series FSHD University

FSHD University – The Pediatric MOVE Study

Zoom Web Conference , United States

The Pediatric MOVE Study Thursday, May 15 19:00 CET | 18:00 GMT | 1:00pm Et | 12:00pm CT | 11:00am MT | 10:00am PT More than 50% of people with FSHD develop symptoms as children or teens. When treatments to slow or stop FSHD are approved, common sense suggests that it will be best to […]

Featured Featured Event Series Young Adults

Young Adults

Zoom Virtual Meeting , United States

Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD – Get Ready for Summer

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 Ranae Beeker and Frank Hanley team up to present a summer safety workshop. This workshop will discuss water safety, walking and hiking, driving and travel, water (hydration) and […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series CarePartner Hour

CarePartner Hour

Zoom Virtual Meeting , United States

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 FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]

Featured Featured Event Series FSHD University

FSHD University – Fulcrum’s Phase 3 Clinical Trial

Zoom Web Conference , United States

FSHD University - Fulcrum's Phase 3 Clinical Trial Wednesday, May 28 1:00 p.m. ET | noon CT | 11:00 a.m. MT | 10:00 a.m. PT | 17:00 GMT | 18:00 CET Fulcrum’s Phase 3 Reach study was the first phase 3 study ever conducted for FSHD. The trial did not meet its primary endpoint and […]

Featured Featured Event Series 2025 FSHD 360s

FSHD 360 – Vancouver

Creekside Community & Recreation Centre 1 Athletes Way, Vancouver, BC, Canada

FSHD 360 Vancouver Sunday, June 1 from 10:00am-3:30pm Creekside Community Recreation Centre 1 Athletes Way, Vancouver, BC V5Y 1V4, Canada FSHD research and drug development is in a new era. Do you know what’s happening and how this might impact your life? Here’s your chance to hear from the research and advocacy leaders in Vancouver […]

Featured Featured Event Series Women on Wellness

Women On Wellness

Zoom Virtual Meeting , United States

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our […]

Featured Featured Event Series Wellness Hour (Virtual Meeting)

Wellness Hour on BetterLife FSHD

Zoom Virtual Meeting , United States

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Kayleigh Worek from the BetterLife FSHD team will take us on a tour of this cutting-edge health and research platform and answer your questions. Join in and hear more about how BetterLife works, what it does, and how it can […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured

2025 International Research Congress on FSHD

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. With the recent advances in FSHD research and clinical advances, this conference has become catalytic in translating ideas into potential therapies. Join us in Amsterdam for what promises to be a […]

Featured Featured

2025 FSHD Connect-Europe

Amsterdam, The Netherlands

FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a networking meeting for FSHD patients and their families. It is a great opportunity to connect with other patients and families across Europe. We hope to […]

Featured Featured Event Series Young Adults

Young Adults

Zoom Virtual Meeting , United States

Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re […]

Featured Featured Event Series Parent Roundtable

Canceled Parents’ Roundtable

Zoom Virtual Meeting , United States

Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT This Roundtable has been canceled. Please join us at our July meeting! Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series CarePartner Hour

CarePartner Hour

Zoom Virtual Meeting , United States

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 FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD: Qi Gong with Frank Hanley

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 a session of Qi Gong meditation, stretching, and breathwork. For people living with FSHD who are interested in exercise and fitness, we meet on […]

Featured Featured Event Series FSHD University

FSHD University – Breathing with FSHD

Zoom Web Conference , United States

Breathing with FSHD Thursday, June 26 5:00pm ET | 4:00pm CT | 3:00pm MT | 2:00pm PT Note: This webinar is not at our usual time due to Dr. Benditt’s clinic schedule. Joshua Benditt, MD, University of Washington, is a professor of pulmonary, critical care and sleep medicine at the UW School of Medicine. As […]

Featured Featured Event Series Women on Wellness

Women On Wellness

Zoom Virtual Meeting , United States

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. […]

Featured Featured

2025 Triple Bypass

The Triple Bypass The Triple Bypass stretches 118 miles, with 10,800 feet of elevation gain over 3 mountain passes: Juniper, Loveland, and Vail. The race will take place on July 12, 2025. George is the founder of Team FSHD Cycling. Since 2017, the team participates in endurance bicycle events to raise awareness and funds for […]

Featured Featured Event Series Wellness Hour (Virtual Meeting)

Wellness Hour

Zoom Virtual Meeting , United States

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in […]

Featured Featured Event Series Everything Early Onset

Everything Early Onset

NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community […]

Featured Featured Event Series Everything Early Onset

Everything Early Onset

NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and support one another. It […]

Featured Featured Event Series Parent Roundtable

Parents’ Roundtable

Zoom Virtual Meeting , United States

Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible, and […]

Featured Featured Event Series Young Adults

Young Adults

Zoom Virtual Meeting , United States

Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series CarePartner Hour

CarePartner Hour

Zoom Virtual Meeting , United States

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 FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. […]

Featured Featured Event Series Women on Wellness

Women On Wellness

Zoom Virtual Meeting , United States

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our […]

Featured Featured Event Series Wellness Hour (Virtual Meeting)

Wellness Hour

Zoom Virtual Meeting , United States

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in […]

Featured Featured Event Series Everything Early Onset

Everything Early Onset

NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and support one another. It […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. […]

Featured Featured

2025 Falmouth Road Race

Sunday, August 18, 2024 2025 Falmouth Road Race The 2025 ASICS Falmouth Road Race promises to be an exciting event celebrating 53 years of running the iconic course along the sea, giving back to the community and promoting running, health and fitness! The race happens at 9:00am on Sunday, August 17. This is our third […]

Featured Featured Event Series Young Adults

Young Adults

Zoom Virtual Meeting , United States

Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re […]

Featured Featured Event Series Parent Roundtable

Parents’ Roundtable

Zoom Virtual Meeting , United States

Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible, and […]

Featured Featured Event Series FSHD University

FSHD University – The Burden of FSHD

Zoom Web Conference , United States

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 The Burden of FSHD Despite the significant disease burden, little has been published on the costs associated with a diagnosis of FSHD to the healthcare and payor systems. Most previous studies examining FSHD-associated costs […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series CarePartner Hour

CarePartner Hour

Zoom Virtual Meeting , United States

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 FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. […]

Featured Featured Event Series Women on Wellness

Women On Wellness

Zoom Virtual Meeting , United States

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our […]

Featured Featured Event Series Wellness Hour (Virtual Meeting)

Wellness Hour

Zoom Virtual Meeting , United States

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in […]

Featured Featured Event Series Everything Early Onset

Everything Early Onset

NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community […]

Featured Featured Event Series Everything Early Onset

Everything Early Onset

NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and support one another. It […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. […]

Featured Featured Event Series Young Adults

Young Adults

Zoom Virtual Meeting , United States

Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re […]

Featured Featured Event Series Parent Roundtable

Parents’ Roundtable

Zoom Virtual Meeting , United States

Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible, and […]

Featured Featured

National Walk & Roll to Cure FSHD

The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser raising awareness and funds for treatments and a cure for FSHD.

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series CarePartner Hour

CarePartner Hour

Zoom Virtual Meeting , United States

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 FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. […]

Featured Featured Event Series Women on Wellness

Women On Wellness

Zoom Virtual Meeting , United States

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our […]

Featured Featured Event Series Endurance Events

Twin Cities Marathon

Twin Cities Marathon or 10 Mile Join us for The Most Beautiful Urban Marathon in America®️, winding through downtown districts and crossing the Mississippi River. The FSHD Society will participate in this event to raise funds for - and awareness about - FSHD treatments and a cure. Twin Cities Marathon website. For more information on […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. […]

Featured Featured Event Series Wellness Hour (Virtual Meeting)

Wellness Hour

Zoom Virtual Meeting , United States

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in […]

Featured Featured Event Series Everything Early Onset

Everything Early Onset

NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and support one another. It […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series Young Adults

Young Adults

Zoom Virtual Meeting , United States

Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re […]

Featured Featured Event Series Parent Roundtable

Parents’ Roundtable

Zoom Virtual Meeting , United States

Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible, and […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series CarePartner Hour

CarePartner Hour

Zoom Virtual Meeting , United States

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 FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]

Featured Featured Event Series Women on Wellness

Women On Wellness

Zoom Virtual Meeting , United States

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our […]

Featured Featured Event Series Wellness Hour (Virtual Meeting)

Wellness Hour

Zoom Virtual Meeting , United States

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in […]

Featured Featured Event Series Everything Early Onset

Everything Early Onset

NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community […]

Featured Featured Event Series Everything Early Onset

Everything Early Onset

NEW DATE AND TIME: Second Monday of every month 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community where we can share our experiences and support one another. It […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. […]

Featured Featured Event Series Young Adults

Young Adults

Zoom Virtual Meeting , United States

Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re […]

Featured Featured Event Series Parent Roundtable

Parents’ Roundtable

Zoom Virtual Meeting , United States

Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible, and […]

Featured Featured Event Series Endurance Events

Tour de Tucson – November 22, 2025

Tour de Tucson - November 22, 2025 El Tour de Tucson is now preparing to host the 42nd year for what we think is one of the premier bicycling events in the country. We hope you participate in this year’s event on November 22, 2025. You won’t be alone given that annually 10,000 cyclists participate […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series CarePartner Hour

CarePartner Hour

Zoom Virtual Meeting , United States

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 FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. […]

Featured Featured Event Series Women on Wellness

Women On Wellness

Zoom Virtual Meeting , United States

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our […]

Featured Featured Event Series Wellness Hour (Virtual Meeting)

Wellness Hour

Zoom Virtual Meeting , United States

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. […]

Featured Featured Event Series Young Adults

Young Adults

Zoom Virtual Meeting , United States

Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT FSHD Young Adults is a social and support group focused on encouraging and empowering young adults impacted by FSHD. We created this space specifically for younger FSHDers to connect, collaborate, and provide networking opportunities. Whether you’re […]

Featured Featured Event Series Parent Roundtable

Parents’ Roundtable

Zoom Virtual Meeting , United States

Parents' Roundtable 8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT Join us for our monthly Parents’ Roundtable on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible, and […]

Featured Featured Event Series FSHD Radio: Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

Facebook, YouTube, and anywhere you listen to podcasts , United States

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 are living rich, full lives and diving into their experiences with FSHD. You can find new episodes on YouTube and Facebook. You can also listen […]

Featured Featured Event Series CarePartner Hour

CarePartner Hour

Zoom Virtual Meeting , United States

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 FSHD. This virtual meeting is a safe and supportive space to share your experiences, challenges, and helpful tips with other care partners (the term we […]

Featured Featured Event Series Feeling Fit with FSHD

Feeling Fit with FSHD

Zoom Virtual Meeting , United States

Feeling Fit with FSHD 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 interested in exercise and fitness, we meet on the 2nd and 4th Thursday of every month at 12:00 pm (noon) U.S. […]

Featured Featured Event Series Women on Wellness

Women On Wellness

Zoom Virtual Meeting , United States

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT We will open 30 minutes earlier than the official start time, for an open forum to chat, get to know each other better, share amongst the great collective of women who participate. This is our […]

Featured Featured Event Series Wellness Hour (Virtual Meeting)

Wellness Hour

Zoom Virtual Meeting , United States

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in […]

Featured Featured Event Series Everything Early Onset

Everything Early Onset

NEW DATE AND TIME: Second Monday of every OTHER month. We will meet in May, July, September, November in 2025. 7:00 p.m. ET | 6:00 p.m. CT | 5:00 p.m. MT | 4:00 p.m. PT The Everything Early Onset group hopes to engage adults of all ages living with early-onset FSHD and build a community […]

Featured Featured Event Series Wellness Hour (Virtual Meeting)

Wellness Hour

Zoom Virtual Meeting , United States

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our monthly Zoom meeting on Wellness is held on the second Monday of each month at 5:00-6:00 pm ET. Each month, we’ll have a conversation starter topic, but this is an informal gathering and if the discussion veers off in […]