Cure FSHD? Now is the time!

We can do more than simply aspire to a treatment in some undefined future. We are confident that, with your continued support, we will have treatments for FSH muscular dystrophy on the market by the year 2025, so that families everywhere can live out their dreams. This is a critical time! The patients and families … Read more of “Cure FSHD? Now is the time!” »

Peace Joy Gratitude

You’ve made a difference and we are grateful As the year draws to a close, all of us at the FSH Society wish you Happy Holidays and thank you for the sacrifices you have made to support our mission. You have had life-changing impacts, not only through the research and patient education your donations have funded, … Read more of “Peace Joy Gratitude” »

An urgent call to action

This year-end webinar by FSH Society CEO Mark Stone is a must watch. He lays out our detailed strategy that will get treatments for FSHD to our families by the year 2025. We have a moral imperative to do everything in our power to overcome all obstacles to FDA approval of the therapies that are … Read more of “An urgent call to action” »

New England chapter meeting talks

The University of Massachusetts Medical School’s Wellstone Center for FSHD Research is a leading team of scientists dedicated to understanding FSH muscular dystrophy and developing treatments. The center kindly hosted our New England Chapter’s November 4th meeting, which began with a tasty lunch, followed by a series of talks about some of the cutting-edge research … Read more of “New England chapter meeting talks” »

A treatment is out there

“Our mom will always be a superhero in our eyes.” Ever since we can remember, our mom has told us that she has “special muscles.” When we were younger, we thought this meant that she was a superhero, and her special muscles were her superpower. As we’ve gotten older, we now know that her special … Read more of “A treatment is out there” »

Finding beauty in disability

by AUBRIE LEE I have a disability. It has manifested differently throughout my life, I have felt differently about it in various stages of my life, and people have treated me differently my whole life because of it. I could walk when I was a child, and I transitioned to using a wheelchair over my … Read more of “Finding beauty in disability” »

Holiday gift ideas

If you are scrambling for last-minute holiday gifts to delight the FSHers in your life, here are a few suggestions. We’d love to hear about your best holiday gift ideas in the comments section! Reusable drinking straws. While FSHD can make it hard for some to sip through a straw, many others rely on straws … Read more of “Holiday gift ideas” »

DUX4 structure unveiled

MINNEAPOLIS, MN- December 12, 2018 – New research by University of Minnesota scientists has revealed the three-dimensional structure of the DUX4 protein, which is responsible for the disease, facioscapulohumeral muscular dystrophy (FSHD). Unlike the majority of genetic diseases, FSHD is not caused by a protein that is missing or not functioning properly. Rather it is … Read more of “DUX4 structure unveiled” »

Freedom Through AFOs

by ROD FULMER, McDonough, Georgia Who wants to wear ankle braces? I wish I didn’t have to wear any, but because I need them, I’m glad I found carbon fiber braces that have worked very well for me. Mine are made by Allard USA, and I discovered them somewhat by accident. My sister and I were … Read more of “Freedom Through AFOs” »