News
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.
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.
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
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.
