FSHD Society

  1. Events
  2. Organizers
  3. FSHD Society
FSHD Society, Lighting the Way to a Cure
(781) 301-6060
fshdmeetings@fshdsociety.org
http://www.FSHDSociety.org
Events from this organizer
Today

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... Read More »

Event Series 2025 Chapter Meetings

Bay Area Chapter Meeting

Stanford Hospital, Hoover Pavilion 211 Quarry Road, 2nd floor, Room 208 - Palo Alto, Palo Alto, CA, United States

Bay Area Chapter Meeting Sunday, May 4, 2025 from 1:00pm-4:00pm PT Stanford University, Hoover Pavilion. 211 Quarry Road. Palo Alto, CA 94304, in Hoover 208 At this meeting, we will be joined by Dr. David Jaffe from Stanford's Mechanical Engineering Department. He teaches "Perspectives in Assistive Technology" and works with students and community members on... Read More »

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... Read More »

Event Series 2025 Chapter Meetings

Chicagoland Chapter Monthly Virtual Meeting

Zoom Virtual Meeting , United States

Chicagoland Chapter Monthly Virtual Meeting 6:10 - 7:10 PM CT, every second Thursday of the month Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and... Read More »

Event Series 2025 Chapter Meetings

Sacramento In-Person Chapter Meeting

UC Davis - Arboretum UC Davis Arboretum Teaching Nursery 1046 Garrod Dr, Davis, CA, United States

Sacramento In-Person Chapter Meeting Saturday, May 10, 2025 from 10:00AM - 1:00PM PT UC Davis Arboretum - Google Map link: https://maps.app.goo.gl/icACixh8cvPqXGLK8 Join us for a leisurely afternoon at the UC Davis Arobetum. Bring your lunch, snacks and water. We can stroll through their beautiful garden and have lunch under a huge majestic oak tree. Oh,... Read More »

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... Read More »

Event Series 2025 Chapter Meetings

North Carolina Third Thursday Chapter Meeting

Zoom Virtual Meeting , United States

North Carolina Third Thursday Chapter Meeting 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 group’s events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific... Read More »

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... Read More »

Featured Featured

2025 Denver Colfax Marathon

Denver Colorado CO, United States

Join the Denver Colfax Marathon Team for the FSHD Society! The Denver Colfax Marathon is a nationally recognized event featuring unique courses incorporating the iconic landmarks of the Mile-High City. Registration details coming soon. Join our Team to fight FSH Muscular Dystrophy. The event starts at Denver’s City Park, on the east side of Ferrill... Read More »

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 Have you heard about BetterLife FSHD? It's the FSHD Society's pathbreaking web portal for helping you navigate your health journey. As you answer the short surveys, the system will enable you to track what you are... Read More »

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 We plan to have a guest from one of the companies working on FSHD therapies to share their progress and discuss how their trials can be more inclusive. Stay tuned. Join us for our monthly Parents’ Roundtable on... Read More »

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.... Read More »

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... Read More »

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... Read More »

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... Read More »

Event Series 2025 Chapter Meetings

PNW Chapter Baseball Game

Cheney Stadium, 2502 S Tyler St, Tacoma, WA 98405 Cheney Stadium 2502 S. Tyler St, Tacoma, WA, United States

PNW Chapter Baseball Game Sunday, June 1, 2025 at 1:00pm PT at Cheney Stadium, Tacoma Join us for an early World FSHD Day and Father's Day celebration as we cheer on the Rainiers! Your free tickets include admission to the game and a meal. We have secured wheelchair-accessible seating as well as seats with minimal stairs.... Read More »

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... Read More »

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... Read More »

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... Read More »

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... Read More »

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.... Read More »

Event Series 2025 Chapter Meetings

Chicagoland Chapter Monthly Virtual Meeting

Zoom Virtual Meeting , United States

Chicagoland Chapter Monthly Virtual Meeting 6:10 - 7:10 PM CT, every second Thursday of the month Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and... Read More »

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... Read More »

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... Read More »

Event Series 2025 Chapter Meetings

North Carolina Third Thursday Chapter Meeting

Zoom Virtual Meeting , United States

North Carolina Third Thursday Chapter Meeting 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 group’s events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific... Read More »

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... Read More »

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... Read More »

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.... Read More »

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... Read More »

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... Read More »

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... Read More »

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.... Read More »

Event Series 2025 Chapter Meetings

Chicagoland Chapter Monthly Virtual Meeting

Zoom Virtual Meeting , United States

Chicagoland Chapter Monthly Virtual Meeting 6:10 - 7:10 PM CT, every second Thursday of the month Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and... Read More »

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... Read More »

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... Read More »

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... Read More »

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... Read More »

Event Series 2025 Chapter Meetings

North Carolina Third Thursday Chapter Meeting

Zoom Virtual Meeting , United States

North Carolina Third Thursday Chapter Meeting 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 group’s events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific... Read More »

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... Read More »

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... Read More »

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.... Read More »

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... Read More »

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... Read More »

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... Read More »

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... Read More »

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.... Read More »

Event Series 2025 Chapter Meetings

Chicagoland Chapter Monthly Virtual Meeting

Zoom Virtual Meeting , United States

Chicagoland Chapter Monthly Virtual Meeting 6:10 - 7:10 PM CT, every second Thursday of the month Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and... Read More »

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... Read More »

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... Read More »

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... Read More »

Event Series 2025 Chapter Meetings

North Carolina Third Thursday Chapter Meeting

Zoom Virtual Meeting , United States

North Carolina Third Thursday Chapter Meeting 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 group’s events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific... Read More »

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... Read More »

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... Read More »

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... Read More »

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.... Read More »

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... Read More »

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... Read More »

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... Read More »

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... Read More »

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.... Read More »

Event Series 2025 Chapter Meetings

Chicagoland Chapter Monthly Virtual Meeting

Zoom Virtual Meeting , United States

Chicagoland Chapter Monthly Virtual Meeting 6:10 - 7:10 PM CT, every second Thursday of the month Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and... Read More »

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... Read More »

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... Read More »

Event Series 2025 Chapter Meetings

North Carolina Third Thursday Chapter Meeting

Zoom Virtual Meeting , United States

North Carolina Third Thursday Chapter Meeting 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 group’s events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific... Read More »

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... Read More »

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.... Read More »

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... Read More »

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... Read More »

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.... Read More »

Event Series 2025 Chapter Meetings

Chicagoland Chapter Monthly Virtual Meeting

Zoom Virtual Meeting , United States

Chicagoland Chapter Monthly Virtual Meeting 6:10 - 7:10 PM CT, every second Thursday of the month Zoom meeting - please RSVP for the link This meeting is a chance for our Chicago Chapter to engage with our FSHD community by building stronger connections, sharing resources, and providing support. Please join us for engaging conversation and... Read More »

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... Read More »

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... Read More »

Event Series 2025 Chapter Meetings

North Carolina Third Thursday Chapter Meeting

Zoom Virtual Meeting , United States

North Carolina Third Thursday Chapter Meeting 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 group’s events before, we hope you will join us for this casual, conversational monthly meeting. We have no specific... Read More »

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... Read More »

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... Read More »

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.... Read More »

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... Read More »

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... Read More »

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... Read More »

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... Read More »

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... Read More »

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... Read More »