My FSHD

My FSHD

Share

My FSHD is for those afflicted by or who support individuals with FSHD Muscular Dystrophy.

01/13/2024

We are planning another video segment this time on the secondary related effects of FSHD, such a bipolar (believe by some to be connected), broken bones from falls, lower levels of bone density, breathing issues, hearing loss, vision complications, joint damage, pain, etc and what if any mitigating efforts you are taking or have taken to deal with them.

I am hoping some of you will post here what conditions are you experiencing beyond simply FSHD so we can present these to a broader audience.

Feel free to PM me too. We expect to bring doing a presentation online in mid February.

Thanks.

Young Adults - Clinical trial updates | FSHD Society 11/20/2023

Join us tonight.

Young Adults - Clinical trial updates | FSHD Society 8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT Join us as June Kinosh*ta, Senior Director of Research & Education, answers your questions about... Read More »

Dr. Rabi Tawil FSHD Research & Retirement Interview 09/07/2023 09/18/2023

https://m.youtube.com/watch?v=kkBDyZheP6s

Dr. Rabi Tawil FSHD Research & Retirement Interview 09/07/2023 Dr. Rabi Tawil is one of three driving forces for creating the circumstances of Facioscapulohumeral dystrophy (FSHD) research for understanding of the diseas...

08/26/2023

This old gentleman made a pram for his paralyzed dog himself. As he said, he takes him for walks so that the dog feels that despite his complete paralysis, "he can still see the world and he is still part of it". Dogs are family ❤

29+ Easy Garden Hacks You'll Wish You Knew About Sooner 07/02/2023

29+ Easy Garden Hacks You'll Wish You Knew About Sooner Green Thumb Gardening Tricks to Help your Garden Thrive By: | Last updated: Sep 27, 2022 Originally Published on familyandpets.com and repurposed with permissions If you enjoy gardening, you’ve probably experienced the joy of harvesting your first crop or blossom. But you’re also aware of how di...

Fulcrum Therapeutics, Inc. 11/11/2019

Fulcrum--currently in clinical trials of ReDUX4 (losmapimod), held a symposium on November 7, 2019.

I am including a link to the webcast. You are required to submit a small amount of information including email to listen to it.
It is very informative. Recommend listening.

Fulcrum Therapeutics, Inc.

Want your organization to be the top-listed Non Profit Organization in Carson City?
Click here to claim your Sponsored Listing.

Telephone

Website

Address


Carson City, NV

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm