Everyday Mindfulness
At our December 13 Wellness Hour, Jennifer Egert led a short session on mindfulness in which she asked people to focus their awareness on their body sitting.
Leading-edge CRISPR biotech chooses FSHD as its first disease target
We introduce this important piece of research making use of a comment from Prof. Massimiliano Filosto, vice president of the UILDM medical-scientific commission and clinical director of NeMO Brescia and leader of the AIM-FSHD group that the FSHD patients of UILDM’s Group have consulted to learn more.
The UILDM-FSHD patient group interviews Comi and Filosto at the FSHD symposium
FSHD patients increasingly active and, as UILDM president Marco Rasconi likes to say: “Present!” in all social and medical-scientific circumstances. So here we are, present at the 1st FSHD symposium organized by the newborn FSHD group coordinated by prof. Massimiliano Filosto, vice president of the UILDM medical-scientific commission and clinical director of NeMO Brescia, together with prof. Giacomo Comi, current president of AIM.
Dave Younger’s exercise arsenal
by David Younger, Austin, Texas
Over the past ten to fifteen years, I have developed an arsenal of products that I use to stay as healthy and active as possible.
Pain management in FSHD
Chronic pain is one of the more difficult aspects of living with FSHD, and also one of the most challenging to manage.
Talking to my 16-year-old self
by Haviva Ner-David*
The last line of my author bio reads: “Rabbi Haviva Ner-David lives with a degenerative genetic form of muscular dystrophy called FSHD, which has been one of her greatest teachers.”
About ankle-foot orthoses (AFOs)
This article is proprty of FSHD Society. Did you know we have an active group of international FSHD advocacy leaders, the World FSHD Alliance? We meet every three months to discuss global strategies. The members bring impressive skills and backgrounds to this task and often share information that we think is valuable to all.
Women on Wellness – Clothing Hacks and more
The “Women on Wellness” Zoom group is for women with FSHD to discuss female-focused health and other topics. These notes are from the November 3, 2021, meeting, which began with discussion about finding clothing that is easier to manage.. Courtesy of FSHD Society. Original article here
Overview of FSHD research around the world
By Fabiola M. Bertinotti (volunteer and international representative of the association at the most important organizations for FSHD)
The TOP question
The queen of all the questions coming from the world of FSHD patients is “when will we have a cure?”. In more concrete terms, this question translates into understanding what the panorama of the various scientific studies currently underway in the world looks like.
Fabiola, the commitment of UILDM volunteering
The UILDM FSHD Group interviewed Fabiola Bertinotti, volunteer and international representative of the association at the most important organizations for facio-scapulo-humeral dystrophy.