Lighting the Way to a Cure

  • Financials
  • Patient Library
  • Blog
  • Calendar
FSHD Header Logo
mobile-logo

  • Who We Are
        • About Us
          • History
          • Mission
          • Our Team
          • Financials
        • Our Impact
          • Therapeutic Accelerator
          • Education
          • Advocacy
          • Our Partners
        • Journey To A Cure
          • 2022 Donor Impact Report
  • Understanding FSHD
        • What is FSHD
          • Symptoms
          • Diagnosis
          • Early-onset FSHD
          • Genetic Testing
        • Living with FSHD
          • Newly Diagnosed?
          • Finding Care
          • Symptom Management
          • Patient Library
        • FSHD University
          • Physical Health
          • Wellness
          • Research
  • Get Involved
        • Support Us
          • Ways to Give
          • Become a Torchbearer
          • Raise Awareness
          • Volunteer
          • Fundraise
        • Advance Research
          • What is a Clinical Trial?
          • Your Involvement Matters
          • Current Trials & Studies
        • Connect
          • Find Your Local Chapter
          • Join the Community
          • World FSHD Alliance
          • Online Communities
        • Events
          • Walk & Roll to Cure FSHD
          • Events Calendar
          • FSHD 360 Regional Conferences
          • World FSHD Day
  • Research
        • For Patients & Families
          • Advance Research
          • True Cost of FSHD Study
          • TestFSHD genetic testing
          • Current Trials and Studies
        • For Researchers
          • Apply for a Grant
          • Research We Have Funded
          • Resources
          • Int’l Research Congress
        • For Clinicians
          • FSHD Masterclass
          • ICD-10
        • For Industry
          • Therapeutic Accelerator
          • Clinical Trial Research Network
          • Drug Development Pipeline
          • Voice of the Patient Report
          • Project Mercury
  • News
    • Media Library
    • Blog
      • Living with FSHD
        • Health and Medicine
        • PT and Exercise
        • Tips and Tricks
        • Mental Health
      • FSHD Society News
      • FSHD Research
      • Fundraising & Events
      • Media & PR
    • FSHD Society Radio
    • The FSHD Advocate
  • Search
  • Financials
  • Patient Library
  • Blog
  • Calendar
  • JOIN US
  • Donate
  • JOIN US
  • Donate

Our new FSHD 101 video

Home / FSHD Society News / Our new FSHD 101 video

Posted on: Jul 20, 2018

Our new video explains the basic facts about facioscapulohumeral muscular dystrophy–the symptoms, how it affects those who have it, how it is inherited, and how many people are affected. Watch it and share it to help educate others about FSH muscular dystrophy.

Thank you to Taylor Toole for compiling this video. Image and video credits: Romana Vysatova, Brent Rowlett, Randy Schafer, Ellen Feldman, and Martyn Kitney.

Share

Filed Under: FSHD Society News, Health and Medicine, Living with FSHD

Comments

  1. Kathy Senecal says

    August 6, 2018 at 12:11 pm

    I would like to thank those responsible for this excellent video! Many of my friends have seen this, and all spoke of how much better they understood the disease. This is an awesome way to educate and inform those around you, which goes a long way in raising public awareness!

    Reply
  2. Barbara Vetter says

    August 7, 2018 at 11:26 am

    Very informative

    Reply
  3. Kathy says

    August 18, 2018 at 10:42 am

    My husband is a long-term care resident at a nursing home because of his advanced FSH MD. The nurses and aides don’t know how to deal with him because he’s not a cookie-cutter patient, i.e. stroke/dementia/Alzheimers sufferer. His brain is perfectly fine; often when a new staff member first encounters my husband, s/he is surprised at how aware and coherent my husband is. We are trying to get as many staffers at the home as possible to watch this video, but it’s an uphill battle, even though we’ve assured them that it’s short and won’t take up much of their time. I want to thank you profusely for producing this video, giving us a way to explain and express our needs and problems in terms that both medical people and every day “civilians” can understand.

    Reply
    • June Kinoshita says

      August 19, 2018 at 9:57 am

      We’re happy that you found the video helpful in your efforts to educate your husband’s care providers.

      Reply
  4. Kurt Bjerga says

    January 3, 2019 at 3:09 pm

    Wow! I don’t think I’ve ever heard about this. It’s heartbreaking. The video was very informative

    Reply

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

SEARCH

Categories

  • FSHD Research
  • FSHD Society News
    • Extraordinary Measures
    • Journey to a Cure
  • Fundraising & Events
  • General
  • Living with FSHD
    • Health and Medicine
    • Mental Health
    • PT and Exercise
    • Tips and Tricks
  • Media & PR

Sign up for Email Alerts

Stay up to date with the latest FSHD news and updates from FSHD Society.

CONNECT WITH US

Proud Member World FSHD Alliance (1)
Footer-Logo-min

General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

Mail Donations to:

FSHD Society
P.O. Box 411617
Boston, MA 02241-1617

(781) 301-6060

  • DONATE
  • Donate
  • Join Us
  • Inclusivity & Equity
  • Privacy Policy
  • Contact Us
  • Glossary Of Scientific Terms
Digital Marketing by