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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.

Every June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD Day. There are many ways to help spread the word about FSHD.

Increased awareness can help improve understanding and knowledge of FSHD and promote early diagnosis and treatment. It can also encourage support for research to find effective treatments and, ultimately, a cure.

Learn More & Access the World FSHD Day Toolkit!

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.

Every June 20th, people around the world join in activities to raise awareness for Facioscapulohumeral muscular dystrophy (FSHD) through World FSHD Day. There are many ways to help spread the word about FSHD.

Increased awareness can help improve understanding and knowledge of FSHD and promote early diagnosis and treatment. It can also encourage support for research to find effective treatments and, ultimately, a cure.

Learn More & Access the World FSHD Day Toolkit!
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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
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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
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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
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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
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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.

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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

Managing Fatigue

May 22, 2023 by jkinoshita

Our May Women on Wellness group discussion focused on a topic that is always a big concern, fatigue. This is a group of women who meet monthly on Zoom and share a common bond of having FSHD. “We speak openly with each other, however we maintain confidentiality of who shares what, as this is a…

Read More...
Project Mercury Inaugural Meeting

Unleashing the Power of Collaboration: Achieving More for FSHD Together

May 25, 2023 by Erin SAxon

by Ken Kahtava, FSHD Society This blog post was originally published here on the Project Mercury website.  On 11 May in Leiden, NL, the Project Mercury global task force members met for the first time to chart the path forward for achieving the…

Read More...
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Upcoming Events

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June 2023

Wed 7
Featured Featured Jun 7 @ 5:00 pm - 6:00 pm Event Series Women on Wellness

Women on Wellness – Instrumental activities of daily living

Zoom Virtual Meeting

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our topic this month is what we call "Instrumental ADL’s (e.g. managing finances, housekeeping, shopping, yard needs, etc.). We all face these challenges and look forward to our discussion and sharing of solutions. This is...

Thu 8
Featured Featured Jun 8 @ 12:00 pm - 1:00 pm Event Series Feeling Fit with FSHD

Feeling Fit with FSHD – Bill Herzberg

Zoom Virtual Meeting

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 Mitch Wade and Bill Herzberg Last month we had the wonderful opportunity to work out with fitness trainer, Mitch Wade. This month, we bring you Bill Herzberg, a retired physician with FSHD...

Mon 12
Wellness Hour
Featured Featured Jun 12 @ 5:00 pm - 6:00 pm

Wellness Hour Movie Night – Crip Camp

Zoom Virtual Meeting

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Change of topic! Instead  of Happy Hour, this month we will enjoy another Movie Night conversation. In the early 1970s, teenagers with disabilities faced a future shaped by isolation, discrimination and institutionalization. Camp Jened, a ramshackle camp “for the handicapped”...

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General Mailing Address:

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

Mail Donations to:

Department 960
PO Box 4106
Woburn, MA 01888-4106

(781) 301-6060

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