My FSHD

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.

11/20/2023

Join us tonight.

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 »

09/18/2023

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

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 ❤

07/02/2023

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...

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.