Remembering Dan Perez, co-founder of the FSHD Society and a driving force in FSHD research and advocacy.

English
English
العربية Afrikaans Deutsch Ελληνικά Español de Argentina Español Español de México Français du Canada Français עִבְרִית हिन्दी Italiano 한국어 Nederlands (België) ਪੰਜਾਬੀ 简体中文 Tiếng Việt Türkçe
  • Events
  • Blog
  • BetterLife
FSHD Society
  • Living with FSHD
        • Understanding FSHD
          • Diagnosis
          • Early-onset FSHD
          • Genetic Testing
          • Symptoms
          • FSHD University
            • Physical Health
            • Wellness
          • Glossary of Scientific Terms
          • Patient Library
          • Genetic Cause
        • Managing FSHD
          • BetterLife FSHD
          • Finding Care
          • FSHD Navigator
          • Newly Diagnosed with FSHD?
          • FSHD Clinical Care
          • Additional Resources
            • Adaptive Equipment
            • Coordinating Care
            • Caregiver Self-care
            • Financial/Legal Resources
            • Family Planning
  • Get Involved
        • Communities
          • Local Chapters
          • Online Communities
            • Gathering Place
            • Social Media
          • Parents’ Roundtable Chapter
          • World FSHD Alliance
        • Events
          • Walk & Roll to Cure FSHD
          • FSHD 360 Regional Conferences
          • FSHD Connect Conference
          • World FSHD Day
        • How to Help
          • Ways to Give
            • Fundraising
            • Donate
          • Volunteer
        • Advocacy
          • Government Advocacy
          • FDA Advocacy
            • Voice of the Patient Report
            • Upper Body Mobility
          • Payor Advocacy
            • True Cost of FSHD
          • Share Your FSHD Story
  • Research & Clinical Care
        • Research & Clinical Trials
          • Drug Development Pipeline
          • Clinical Trial Research Network
          • Current Trials and Studies
          • Clinical Trial Education
            • Clinical Trials 101
            • Are Clinical Trials Right for Me?
            • How to Get Started with a Clinical Trial
            • Screening and consent
            • What to expect
            • After a Trial
          • Research Updates
        • For Researchers
          • International Research Congress
          • BetterLife FSHD Research Gateway
          • Apply for a Grant
        • For Clinicians
          • Continuing Education
          • FSHD Masterclass
        • Therapeutic Accelerator
          • Project Mercury
          • Global Innovation Hub
  • About Us
        • About the FSHD Society
          • History
          • Our Mission
          • Our Impact
            • Research We Have Funded
          • Our Team
          • Our Partners
          • Financials
          • Media Center
            • Brand Guidelines
  • News & Media
        • Blog
          • FSHD Research
          • FSHD Society News
          • Fundraising & Events
          • General
          • Living with FSHD
            • Health and Medicine
            • Mental Health
            • PT and Exercise
            • Tips and Tricks
          • Media & PR
        • Media Library
        • FSHD Straight Talk Podcast
        • The FSHD Advocate Magazine
  • Events
  • Blog
  • BetterLife
  • Donate Today
Donate Today
99 events found.

FSHD Society

« All Events
FSHD Society, Lighting the Way to a Cure
Phone (781) 301-6060
Email fshdmeetings@fshdsociety.org
Website http://www.FSHDSociety.org
Events from this organizer
Today
  • July 2025
  • Mon 7
    Jul 7 @ 7:00 pm - 8:00 pm 2025 Chapter Meetings

    North Texas Virtual Chapter Meeting

    Zoom Virtual Meeting , United States

    8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to […]

  • Tue 8
    Featured Jul 8 @ 8:00 am 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 […]

  • Thu 10
    Featured Jul 10 @ 12:00 pm - 1:00 pm 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 Presenter: Kathy Senecal, FSHD patient and Registered Yoga Therapist with specialty training in Yoga for Disabled Folks This yoga class is designed specifically for folks with FSHD. You […]

  • Thu 10
    Jul 10 @ 6:10 pm - 7:10 pm 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 […]

  • Sat 12
    Featured Jul 12

    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 […]

  • Sun 13
    Jul 13 @ 2:30 pm - 3:30 pm

    Dakotas Chapter In-Person Meeting

    Dakotas Chapter In-Person Meeting Sunday, July 13 from 2:00-3:00pm Location: 3788 55th Ave S, Fargo, ND 58104 Please join us for a FSHD Society Dakotas Chapter social gathering. Event RSVP

  • Mon 14
    Featured Jul 14 @ 4:00 pm - 5:00 pm 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 […]

  • Mon 14
    Featured Jul 14 @ 7:00 pm - 8:00 pm Everything Early Onset

    Everything Early Onset

    Zoom Virtual Meeting , United States

    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 […]

  • Tue 15
    Featured Jul 15 @ 8:00 pm - 9:00 pm 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 […]

  • Thu 17
    Featured Jul 17 @ 1:00 pm - 2:00 pm FSHD University

    FSHD University – The Role of the Physiatrist in Managing FSHD

    Zoom Web Conference , United States

    The Role of the Physiatrist in Managing FSHD Thursday, July 17 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 Most people with FSHD have heard they should see a neurologist. But when we advise them to also establish care with a physiatrist, […]

  • Mon 21
    Featured Jul 21 @ 8:00 pm - 9:00 pm 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 Presenters: Beth & Jeff Johnston You're invited to a special Young Adults Gathering Place focused on love, connection, and navigating relationships with FSHD. We’re thrilled to welcome Beth Johnston from the FSHD Society and her husband […]

  • Tue 22
    Featured Jul 22 @ 8:00 am 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 […]

  • Tue 22
    Jul 22 @ 6:00 pm - 7:00 pm 2025 Chapter Meetings

    Virginia Chapter Monthly Virtual Meeting

    Zoom Virtual Meeting , United States

    Virginia Chapter Monthly Virtual Meeting 6:00pm - 7:00pm ET, every 4th Tuesday of the month Virtual via Zoom - RSVP for the link DETAILS: Join us for our monthly meeting for casual conversations!

  • Thu 24
    Featured Jul 24 @ 12:00 pm - 1:00 pm 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. […]

  • Tue 29
    Featured Jul 29 @ 8:00 pm - 9:00 pm 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 […]

  • Wed 30
    Jul 30 @ 7:00 pm - 8:00 pm 2025 Chapter Meetings

    New England Monthly Virtual Meeting

    Zoom Virtual Meeting , United States

    New England Monthly Virtual Meeting Wednesday, July 30th, 2025 at 7:00pm ET via Zoom - RSVP for the link   Join us for an informal gathering on zoom to hear the latest in FSHD news and discuss the details of the upcoming in-person luncheon as well as our annual walk and roll on September 21.All […]

  • August 2025
  • Sat 2
    Aug 2 @ 12:00 pm - 2:00 pm 2025 Chapter Meetings

    Western PA Chapter Picnic

    Adams Township Community Park, 698 Valencia Rd., Mars, PA 16046 Valencia Road, Mars, PA, United States

    Western PA Chapter Picnic 12:00pm ET, Adams Township Community Park, Township Pavilion, 698 Valencia Rd., Mars, PA 16046 RSVP: Chapter Meeting RSVP

  • Mon 4
    Aug 4 @ 7:00 pm - 8:00 pm 2025 Chapter Meetings

    North Texas Virtual Chapter Meeting

    Zoom Virtual Meeting , United States

    8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to […]

  • Wed 6
    Featured Aug 6 @ 5:00 pm - 6:00 pm 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 Kathy Senecal will provide Part II of Yogic Breathing Techniques. If you missed part I please don’t hesitate to join us. Kathy is excellent and will provide the tools we need to fully participate. We […]

  • Sat 9
    Aug 9 @ 10:15 am - 11:30 am 2025 Chapter Meetings

    San Diego Chapter In-Person Meeting

    Carmel Mountain Ranch Library, 12095 World Trade Dr., San Diego, CA 92128 Carmel Mountain Ranch Livbrary 12095 World Trade Drive, San Diego, CA, United States

    San Diego Chapter In-Person Meeting with Avidity August 9th, 2025 | 10:15am PT Carmel Mountain Ranch Library, 12095 World Trade Dr., San Diego, CA 92128 Speakers from Avidity Biosciences are joining the San Diego Chapter to discuss the most up to date information on Del-Brax. Please RSVP and join us at the Carmel Mountain Ranch […]

  • Sun 10
    Aug 10 @ 12:00 pm - 5:00 pm 2025 Chapter Meetings

    New England Chapter In-Person Meeting

    Harry C Barnes Memorial Nature Center - 175 Shrub Road Bristol CT 06010 175 Shrub Road, Bristol, CT, United States

    New England Chapter In-Person Meeting: August 10, 2025 12:00pm at Harry C Barnes Memorial Nature Center - 175 Shrub Road Bristol CT 06010 Come join the FSHD New England community for a casual luncheon at the Barnes Nature Center. Lunch will be provided and RSVP required. There is a beautiful mile-long wheelchair accessible trail through […]

  • Sun 10
    Aug 10 @ 1:00 pm - 3:00 pm

    Bay Area Hybrid Chapter Meeting

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

    Sunday, August 10, 2025 at 1:00pm PT Stanford University, Hoover 208, 213 Quarry Rd, Palo Alto, CA or Virtual via Zoom (RSVP for the link) Please join us for the SF Bay Area Chapter meeting on Sunday, August 10, at 1pm, at Stanford in the Hoover bldg, Room 208. We are excited to have our […]

  • Mon 11
    Featured Aug 11 @ 4:00 pm - 5:00 pm 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 Join us for the upcoming FSHD Wellness Hour, where we’ll share and explore the best life hacks for managing life with FSHD. Whether you're living with FSHD or caring for someone who is, this is a great opportunity to learn […]

  • Tue 12
    Featured Aug 12 @ 8:00 am 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 […]

  • Wed 13
    Featured Aug 13 @ 11:00 am - 12:00 pm FSHD University

    FSHD University: The Opportunities of Strength Training in FSHD

    Zoom Web Conference , United States

    In this FSHD University webinar, we’ll dive into the role of strength training and how it may help support mobility, function, and overall well-being.

  • Thu 14
    Featured Aug 14 @ 12:00 pm - 1:00 pm 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 Join us for this month's Feeling Fit with FSHD, where Kathy Senecal will lead a an accessible chair yoga class designed for all mobility levels, including those who […]

  • Sun 17
    Featured Aug 17

    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 […]

  • Tue 19
    Featured Aug 19 @ 8:00 pm - 9:00 pm Young Adults

    Young Adults

    Young Adults Monthly Meeting 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us for the next Young Adults Gathering Place as we welcome special guest Rick Whitehead for an open and informative conversation about his personal journey with abdominal surgery and the use of supportive devices. Whether […]

  • Tue 19
    Featured Aug 19 @ 8:00 pm - 9:00 pm 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 the next Parents Roundtable on August 19th, featuring Dr. Kathy Mathews, who will discuss genetic testing for children and how to talk with your child about an FSHD diagnosis. This important conversation will explore both […]

  • Sat 23
    Aug 23 @ 6:00 pm - 9:00 pm 2025 Chapter Meetings

    North Carolina Chapter Baseball Game

    Hickory Crawdads Stadium 2500 Clement Blvd NW, Hickory, NC 28601 Hickory Crawdads Stadium 2500 Clement Blvd NW, Hickory, NC, United States

    North Carolina Chapter Baseball Game Saturday, August 23, 6:00pm, Hickory Crawdads Stadium 2500 Clement Blvd NW, Hickory, NC 28601 Join us for a night at the ballpark! There are 30 spots reserved. We cannot exceed 30. So, the sooner everyone reserves your ticket, the better! Just a FYI there is a $5 parking fee and […]

  • Mon 25
    Featured Aug 25 @ 5:00 pm - 6:30 pm 2025 Chapter Meetings

    Mountain & Pacific Chapters Meeting

    Zoom Virtual Meeting , United States

    Monday, August 25 5:00pm PT / 6:00pm MT / 7:00pm CT / 8:00pm ET We’re excited to invite you to our next Multi-Chapter Meeting, a virtual event that brings together several FSHD chapters for updates and peer connection. This is part of a new national meeting series designed to strengthen our chapter network and keep […]

  • Tue 26
    Featured Aug 26 @ 8:00 am 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 […]

  • Tue 26
    Featured Aug 26 @ 6:00 pm - 7:30 pm 2025 Chapter Meetings

    Eastern & Central Time Zones Chapter Meeting

    Zoom Virtual Meeting , United States

    Tuesday, August 26 7:00pm ET / 6:00pm CT / 5:00pm MT / 4:00pm PT We’re excited to invite you to our next Multi-Chapter Meeting, a virtual event that brings together several FSHD chapters for updates and peer connection. This is part of a new national meeting series designed to strengthen our chapter network and keep […]

  • Tue 26
    Featured Aug 26 @ 8:00 pm - 9:00 pm 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 […]

  • Thu 28
    Featured Aug 28 @ 12:00 pm - 1:00 pm 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 Join us for this month's Feeling Fit with FSHD, where Kathy Senecal will lead a an accessible chair yoga class designed for all mobility levels, including those who […]

  • September 2025
  • Wed 3
    Featured Sep 3 @ 5:00 pm - 6:00 pm 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   Come and learn about the many different forms of adaptive sports there are out there... from someone who has enjoyed so many of them... successfully. Presented by our own Dee Squire! We will open […]

  • Thu 4
    Sep 4 @ 7:00 pm - 8:00 pm 2025 Chapter Meetings

    Reunion du la Chapitre du Québec/Quebec Chapter Introductory Virtual Meeting

    Zoom Virtual Meeting , United States

    Réunion du lancement du chapitre du Québec/Launch meeting of the Montreal (Quebec) Chapter 7:00pm ET, sur Zoom/via Zoom Ordre du jour Présentation brève de l’histoire de la FSHD Society et de ses chapitres canadiens Présentation de la mission de la FSHD Society et du rôle des chapitres Informer la communauté sur les principales activités à […]

  • Sat 6
    Sep 6 2025 Walk & Roll

    Dakotas 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.

  • Sat 6
    Sep 6 @ 2:00 pm - 4:00 pm 2025 Walk & Roll

    Pacific Northwest Sips & Smores for Smiles

    The Lai Residence, Gig Harbor

    Register for the Pacific Northwest Sips & Smores and support our annual FSHD fundraising campaign. Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join your online fundraising efforts. Then we will celebrate the Pacific Northwest together with sips and s'mores!

  • Sun 7
    Sep 7

    Colorado 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.

  • Sun 7
    Sep 7

    Sacramento 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.

  • Mon 8
    Featured Sep 8 @ 4:00 pm - 5:00 pm 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 Join us for a powerful Gathering Place session with Patricia Isis, PhD, LMHC-QS, ATR-BC, ATCS, a Certified Teacher of Mindful Self-Compassion. This session will focus on understanding and easing the weight of shame, one of the most challenging human emotions. […]

  • Mon 8
    Featured Sep 8 @ 7:00 pm - 8:00 pm Everything Early Onset

    Everything Early Onset

    Zoom Virtual Meeting , United States

    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 Join us for a discussion around the struggles and solutions of having early onset FSHD while pursuing higher education. We […]

  • Tue 9
    Featured Sep 9 @ 8:00 am 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 […]

  • Thu 11
    Featured Sep 11 @ 12:00 pm - 1:00 pm Feeling Fit with FSHD

    Feeling Fit with FSHD: Preventing Falls: Moving with Balance, Awareness, and Intention

    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 Preventing Falls: Moving with Balance, Awareness, and Intention September is “Fall Prevention Month” In this Feeling Fit workshop, Frank Hanley will discuss Fall Prevention and explore two themes: […]

  • Sat 13
    2025 Albert Walk & Roll event
    Sep 13 2025 Walk & Roll

    2025 Alberta 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.

  • Sat 13
    Sep 13

    Ontario 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.

  • Sat 13
    Sep 13

    Chicagoland 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.

  • Sun 14
    Sep 14

    Michigan 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.

  • Mon 15
    Featured Sep 15 @ 8:00 pm - 9:00 pm Young Adults

    Young Adults

    Zoom Virtual Meeting , United States

    8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us on September 15 for the next Young Adults Gathering Place hour! We’re excited to welcome Frank Hanley, who will share his expert insights on the top exercises for people living with FSHD. Whether you’re looking to build strength, […]

  • Tue 16
    Featured Sep 16 @ 8:00 pm - 9:00 pm 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 the September Parents Roundtable featuring guest speaker Amber Salzman, CEO of Epicrispr and passionate parent advocate. Amber will share her personal journey as a parent in the rare disease space and how it led her […]

  • Thu 18
    Sep 18 @ 1:00 pm - 2:00 pm

    FSHD University: MRI Biomarkers in FSHD

    Zoom Web Conference , United States

    FSHD University: MRI Biomarkers in FSHD Presenter: Seth Friedman, PhD Join us for an FSHD University webinar exploring the role of MRI in facioscapulohumeral muscular dystrophy (FSHD) clinical trials. Dr. Seth Friedman will discuss how advanced imaging helps track disease progression, select trial participants, and evaluate therapeutic impact. This will provide an opportunity to learn […]

  • Thu 18
    Sep 18 @ 7:00 pm - 8:00 pm 2025 Chapter Meetings

    North Carolina 3rd Thursday

    Zoom Virtual Meeting , United States

    7:00pm ET, via Zoom   Join the North Carolina Chapter for our monthly "Third Thursday" meeting. RSVP: Chapter Meeting RSVP

  • Sat 20
    Sep 20

    Columbus 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.

  • Sat 20
    Sep 20

    Mid-Atlantic 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.

  • Sat 20
    Featured Sep 20

    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.

  • Sat 20
    Sep 20

    NE Florida 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.

  • Sat 20
    Sep 20

    San Diego 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.

  • Sat 20
    Sep 20 2025 Walk & Roll

    St. Louis Walk & Roll to Cure FSHD

    2025 St. Louis Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social […]

  • Sun 21
    Sep 21

    New England 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.

  • Sun 21
    Sep 21 2025 Walk & Roll

    Minnesota Walk & Roll to Cure FSHD

    2025 Minnesota Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who registers will be given a free participant page and access to a state-of-the-art fundraising center. From there, you can share your story on social media […]

  • Tue 23
    Featured Sep 23 @ 8:00 am 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 […]

  • Tue 23
    FSHD University Logo
    Featured Sep 23 @ 1:00 pm - 2:00 pm FSHD University

    FSHD University – Preventing Falls: Moving with Balance, Awareness, and Intention

    Zoom Web Conference , United States

    Join us for an engaging FSHD University session with Frank Hanley as he explores practical strategies to improve balance, stability, and confidence while reducing the risk of falls. Frank will focus on two key themes: Stepping – Learn how deliberate, well-placed steps can enhance stability and make movement safer, even for those with limited mobility. […]

  • Tue 23
    Sep 23 @ 6:00 pm - 7:00 pm 2025 Chapter Meetings

    Virginia Chapter Monthly Virtual Meeting

    Zoom Virtual Meeting , United States

    Virginia Chapter Monthly Virtual Meeting 6:00pm - 7:00pm ET, every 4th Tuesday of the month Virtual via Zoom - RSVP for the link DETAILS: Join us for our monthly meeting for casual conversations!

  • Wed 24
    Sep 24 @ 7:00 pm - 8:00 pm 2025 Chapter Meetings

    North Texas Virtual Chapter Meeting

    Zoom Virtual Meeting , United States

    8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Please RSVP […]

  • Thu 25
    Featured Sep 25 @ 12:00 pm - 1:00 pm 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 Chair Yoga This class, taught by Donna Russo, BA in Dance,  from Mercyhurst University certified in Chair Yoga, concentrates on breathing techniques and meditation to help relieve stress. […]

  • Fri 26
    Sep 26 @ 7:00 pm - 8:00 pm 2025 Chapter Meetings

    Los Angeles Chapter Virtual Meeting

    Zoom Virtual Meeting , United States

    7:00pm PT, via Zoom Local Chapter Meeting to discuss everything LA and FSH, share ideas, personal stories and connect! RSVP Here

  • Sat 27
    Sep 27

    Long Island 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.

  • Sat 27
    Sep 27

    Virginia 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.

  • Sat 27
    Sep 27 2025 Walk & Roll

    Intermountain (Idaho Falls) Walk & Roll to Cure FSHD

    The Walk & Roll to Cure FSHD is the FSHD Society’s largest, annual fundraiser. It is also the ONLY signature event in North America dedicated to raising funds for FSHD research, cures, and community support. 

  • Sun 28
    Sep 28

    New Jersey Shore 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.

  • Tue 30
    Featured Sep 30 @ 8:00 pm - 9:00 pm 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 […]

  • October 2025
  • Thu 2
    Featured Oct 2 @ 7:00 pm - 8:00 pm FSHD University

    FSHD University: Smart Home Technologies for Individuals with FSHD

    Zoom Web Conference , United States

    Smart Home Technologies for Individuals with FSHD Presenters: Justin Hill & Don Burke Join us for an exciting FSHD University webinar exploring how smart home technologies can make daily life easier and more accessible for individuals living with FSHD. Community members Justin Hill and Don Burke, both passionate and avid users of smart technology, will […]

  • Sat 4
    Oct 4

    North Carolina 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.

  • Sat 4
    Featured Oct 4 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 […]

  • Sun 5
    Atlanta Walk & Roll 2025
    Oct 5 2025 Walk & Roll

    2025 Atlanta 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.

  • Sun 5
    Oct 5

    Los Angeles 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.

  • Tue 7
    Featured Oct 7 @ 7:00 pm - 8:00 pm Living Spiritually

    Living Spiritually with FSHD

    Zoom Virtual Meeting , United States

    Join us for the very first meeting of our newest Gathering Place group, Living Spiritually with FSHD! This group is designed to provide a welcoming space where we can connect, share, and explore the ways faith and FSHD intersect in our lives. During this first session, we’ll introduce ourselves, discuss the goals and purpose of the […]

  • Wed 8
    Oct 8 @ 7:00 pm - 8:00 pm 2025 Chapter Meetings

    New England Chapter Meeting

    Zoom Virtual Meeting , United States

    Check in, get the latest from the FSHD Society, and the group will share in areas of interest. RSVP Here

  • Thu 9
    Featured Oct 9 @ 7:00 pm - 8:00 pm Feeling Fit with FSHD

    Feeling Fit with FSHD

    Zoom Virtual Meeting , United States

    Feeling Fit with FSHD 7:00 PM ET | 6:00 PM CT | 5:00 PM MT | 4:00 PM PT In this Feeling Fit workshop, Frank Hanley will review the Fall Prevention strategies and exercises that he presented in part 1 of this workshop.   In this session we will ... review how deliberate, well-placed steps can […]

  • Sat 11
    Texas Walk & Roll Event 2025
    Oct 11 2025 Walk & Roll

    2025 Texas 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.

  • Mon 13
    Featured Oct 13 @ 4:00 pm - 5:00 pm 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 […]

  • Tue 14
    Featured Oct 14 @ 8:00 am 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 […]

  • Wed 15
    Featured Oct 15 @ 5:00 pm - 6:00 pm Women on Wellness

    Women on Wellness – Rescheduled

    Zoom Virtual Meeting , United States

    5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This meeting will be a session of chair yoga led by Donna Russo. 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 […]

  • Thu 16
    Featured Oct 16 @ 1:00 pm - 2:00 pm FSHD University

    FSHD University: The Global FSHD Innovation Hub

    Zoom Web Conference , United States

    Learn about the Global FSHD Innovation Hub, a collaborative platform designed to accelerate the development of FSHD therapeutics and get treatments to patients faster.

  • Thu 16
    Oct 16 @ 7:00 pm - 8:00 pm 2025 Chapter Meetings

    Carolinas Chapter Meeting

    Zoom Virtual Meeting , United States

    North Carolina & South Carolina friends, please join us for our monthly "Third Thursday" call! RSVP: Chapter Meeting RSVP

  • Mon 20
    Featured Oct 20 @ 8:00 pm - 9:00 pm Young Adults

    Young Adults – Discussions on Eyecare

    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 […]

  • Tue 21
    Featured Oct 21 @ 8:00 pm - 9:00 pm 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 the October Parents Roundtable with special guest Dr. Corrie Erasmus, a leading FSHD researcher from the Netherlands. Dr. Erasmus will present findings from her groundbreaking 5-year study on early onset FSHD, one of the most […]

  • Thu 23
    Featured Oct 23 @ 12:00 pm - 1:00 pm Feeling Fit with FSHD

    Feeling Fit with FSHD – Chair Yoga with Donna Russo

    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. […]

  • Sun 26
    Oct 26

    Western Pennsylvania Drum & 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.

  • Tue 28
    Featured Oct 28 @ 8:00 am 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 […]

  • Tue 28
    Oct 28 @ 6:00 pm - 7:00 pm 2025 Chapter Meetings

    Virginia Chapter Monthly Virtual Meeting

    Zoom Virtual Meeting , United States

    Virginia Chapter Monthly Virtual Meeting 6:00pm - 7:00pm ET, every 4th Tuesday of the month Virtual via Zoom - RSVP for the link DETAILS: Join us for our monthly meeting for casual conversations!

  • Tue 28
    Featured Oct 28 @ 8:00 pm - 9:00 pm 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 […]

  • Wed 29
    Oct 29 @ 7:00 pm - 8:00 pm 2025 Chapter Meetings

    North Texas Monthly Chapter Meeting

    Zoom Virtual Meeting , United States

    Please join us on the last Wednesday of the month for a virtual chapter meeting. This will be our time to come together – where Connections, Hope, Healing, and Awareness happen on a consistent basis! Hope to see you there! ~Glen Denehie, North Texas Chapter Director RSVP Here

  • Thu 30
    Featured Oct 30 @ 1:00 pm - 2:00 pm FSHD University

    FSHD University: Navigating Medicare – Maximizing Your Benefits with FSHD

    Zoom Web Conference , United States

    Navigating Medicare – Maximizing Your Benefits with FSHD Presenter: Bill Maclean Understanding Medicare can feel overwhelming, especially when living with FSHD or caring for someone who is. Join us for this informative FSHD University webinar with Bill Maclean, a volunteer Medicare consultant, who will break down the essentials of Medicare and help you better understand […]

  • Thu 30
    Oct 30 @ 6:00 pm - 7:30 pm 2025 Chapter Meetings

    Rencontre du Chapitre du Québec/Meeting of the Québec Chapter

    Quartier DIX30, 1520 Av. des Lumières #10, Brossard, QC J4Y 0B3 Quartier DIX30, 1520 Av. des Lumières #10, Brossard, QC, Canada

    Chers amis de la communauté FSHD du Québec, Nous avons le plaisir de vous inviter à une rencontre conviviale du Chapitre du Québec, qui aura lieu le 30 octobre prochain à 18h00 au restaurant Zibo! de Brossard. Ce sera une occasion précieuse de mieux faire connaissance et de discuter ensemble des activités à venir et de […]

  • November 2025
  • Sat 1
    Featured Nov 1 @ 9:00 am - 4:30 pm 2025 FSHD 360s

    Philadelphia FSHD 360

    CHOP Buerger Center for Advanced Pediatric Care 3500 Civic Center Blvd, Philadelphia, PA 19104 CHOP Buerger Center for Advanced Pediatric Care 3500 Civic Center Blvd, Philadelphia, PA, United States

    Saturday, November 1, 2025 Join us at our upcoming FSHD 360 regional conference where you'll hear directly from experts and medical professionals about the latest in research, treatments, and care. You'll also connect with other patients, families, and caregivers, making this a powerful space for everyone to learn and grow together. This event covers more […]

  • Tue 4
    Featured Nov 4 @ 7:00 pm - 8:00 pm Living Spiritually

    Living Spiritually with FSHD: Finding Meaning in Redemptive Suffering

    Zoom Virtual Meeting , United States

    Join us for our next Living Spiritually with FSHD Gathering as we explore the concept of redemptive suffering—the idea that our struggles and pain are not without purpose, but can be transformed into something meaningful. Together, we’ll discuss how moments of hardship can be offered for the spiritual growth and healing of ourselves and others. […]

  • Wed 5
    Featured Nov 5 @ 5:00 pm - 6:00 pm 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 […]

  • Previous Events
  • Today
  • Next Events
  • Google Calendar
  • iCalendar
  • Outlook 365
  • Outlook Live
  • Export .ics file
  • Export Outlook .ics file

Stay Informed

Sign up for email alerts and stay up to date with the latest FSHD news and updates.

This field is for validation purposes and should be left unchanged.
Name(Required)
FSHD Society
75 North Main Street, Suite 1073
Randolph, MA 02368
(781) 301-6060
Donations: PO Box 411617 Boston, MA 02241-1617
Donate Today
  • Living With FSHD
    • Glossary of Scientific Terms
    • Understanding FSHD
    • Managing FSHD
    • Research & Clinical Trials
    • Join Us
  • Advocacy
    • Communities
    • Events
    • Fundraising
    • Get Involved
  • Research
    • Therapeutic Accelerator
    • Research & Clinical Trials
    • For Clinicians
    • Grant Opportunities
  • Twitter
  • Instagram
  • Facebook
  • YouTube
  • LinkedIn
  • Discord

©2025 FSHD Society. All Rights Reserved.

  • Inclusivity and Equity
  • Privacy Policy
  • Financials
  • Glossary
  • Contact Us
We've detected you might be speaking a different language. Do you want to change to:
English
English
Change language to العربية العربية
Change language to Afrikaans Afrikaans
Change language to Deutsch Deutsch
Change language to Ελληνικά Ελληνικά
Change language to Español de Argentina Español de Argentina
Change language to Español Español
Change language to Español de México Español de México
Change language to Français du Canada Français du Canada
Change language to Français Français
Change language to עִבְרִית עִבְרִית
Change language to हिन्दी हिन्दी
Change language to Italiano Italiano
Change language to 한국어 한국어
Change language to Nederlands (België) Nederlands (België)
Change language to ਪੰਜਾਬੀ ਪੰਜਾਬੀ
Change language to 简体中文 简体中文
Change language to Tiếng Việt Tiếng Việt
Change language to Türkçe Türkçe
Change Language
Close and do not switch language
English
العربية Afrikaans Deutsch Ελληνικά Español de Argentina Español Español de México Français du Canada Français עִבְרִית हिन्दी Italiano 한국어 Nederlands (België) ਪੰਜਾਬੀ 简体中文 Tiếng Việt Türkçe