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

Ensuring no one has to face Facioscapulohumeral Muscular Dystrophy (FSHD) alone

Our goal for all impacted by FSHD is two-fold: 1) Speed the delivery of effective treatments and a cure; 2) Ensure those impacted have what they need to live their best life.

The FSHD Society has played a key role in the advancement of FSHD therapies and provides support to our community worldwide. Together, we're poised to reach more milestones in 2024.

Generous individuals are matching all donations made by December 31, 2023. Join us in changing the world for the FSHD Community!

the road ahead
further-research-ico-min

Advance Research

Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.

HELP ADVANCE RESEARCH
educate-yourself-min

Educate Yourself

FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD.  The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.

LEARN MORE
Community icon

Build Community

There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.

GET INVOLVED
help-others-min

Invest in Hope

We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.

SEE HOW YOU CAN HELP
Play Video

Who We Are

The  FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.

Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.

BBB Accredited Charity logo Give.org
Great Nonprofits Top-Rated Nonprofit award icon
Guidestar Platinum Transparency Seal Candid 2023
badge-charity-navigator
FSHD University

Education: A Patient's Best Weapon for Change

FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.

FSHD University is a place for you to gain knowledge, get connected, and find hope.

Learn More & Enroll in FSHD-U

Latest Blog Posts

Step by step. Inch by inch

November 22, 2023 by jkinoshita

I have never met most of you, but you are all my village by Brian Jude Loiacono When I reflect back on my life playing all kinds of sports in the mid to late 1960’s, having muscular dystrophy was the farthest thing from my thoughts. The medical community was still evolving in its knowledge of…

Read More...

The FACT Alliance

November 28, 2023 by jkinoshita

Progress through collaboration by Jamshid Arjomand, PhD, Chief Science Officer As a fan of home improvement shows, I’m fascinated by the evolution of going from an idealized dream home or floor plan to the ultimate result. Compromise is always a…

Read More...
SEE ALL BLOG POSTS

Upcoming Events

Loading view.

Featured

  1. Events
  2. Featured
Today

December 2023

Wed 6
Featured Featured Dec 6 @ 5:00 pm - 6:00 pm Event Series Women on Wellness

Women on Wellness – Estrogen & FSHD

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 Our guest this month is Loralei Thornburg, MD, professor of obstetrics and gynecology at the University of Rochester. She is a co-author of the pregnancy and reproductive medicine section of the forthcoming international care guideline...

Mon 11
Wellness Hour
Featured Featured Dec 11 @ 5:00 pm - 6:00 pm

Wellness Hour – Chair dance party

Zoom Virtual Meeting , United States

Dancing with differences: A Moving Celebration of the Season 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Join us for a joyous and energizing Chair Dance Party to celebrate the winter and holiday season. Bring your favorite libation and be prepared to shake, rattle and roll to dance...

Tue 12
FSHD Society Radio logo with microphone
Featured Featured Dec 12 @ 8:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, December 12th On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. More details on this episode's guest and topic to come. A new video...

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

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