About FSHD Global

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So far FSHD Global has created 59 blog entries.

1991

FSHD is linked to alterations on the long arm of chromosome 4 near the tip (4q35)

19912019-10-02T18:12:46+10:00

1952

It was not until 1952 that a formal definition of the clinical features of FSHD was developed. This was based on a large family (1249 individuals!) from Utah who were affected by FSHD. The study was the first to describe the inheritance and the term FSHD was coined. [...]

19522019-10-02T18:12:46+10:00

1886

The same physicians publish a paper on FSHD which describes the familial pattern of the condition.

18862019-10-02T18:12:46+10:00

1884

FSHD first described by French physicians Louis Landouzy and Joseph Dejerine.

18842019-10-02T18:12:46+10:00

Emma’s Story

A family perspective - A cure for FSHD would mean Hannah and I can run on a beach together. She could dance and twirl till her heart is content. I hope that one day, she can. Many people in the FSHD community may remember the story of [...]

Emma’s Story2019-10-02T18:12:46+10:00

EMMA’S STORY

A family perspective - A cure for FSHD would mean Hannah and I can run on a beach together. She could dance and twirl till her heart is content. I hope that one day, she can. Many people in the FSHD community may remember the story of my life [...]

EMMA’S STORY2019-10-02T18:12:47+10:00

HEATHER’S STORY

Donate to the FSHD Global Christmas Appeal to help find a Cure! Hi, my name is Heather, I am 57 years old. I have 4 children and 7 grandchildren. I was diagnosed with FSHD 7 years ago.  As far as I know, I am the only one in my [...]

HEATHER’S STORY2019-10-02T18:12:47+10:00

SHANE’S STORY

Shane’s Christmas wish is to find a cure for FSHD so that his grandchildren never have to live with this insidious disease This is Shane’s Story….. My name is Shane and this is my story. I have just turned 51 years old and I have FSHD. I was first [...]

SHANE’S STORY2019-10-02T18:12:47+10:00

TANIA’S STORY

Tania is our proud NSW State Branch President, FSHD Global Ambassador & Community Liaison and Administration Assistant. She is full of warmth, positivity and laughter despite going through a tough 12 months. This is Tania’s Story… I was diagnosed with FSHD when I was 12, but I’ve had the symptoms [...]

TANIA’S STORY2019-10-02T18:12:47+10:00

2019 SYDNEY CHOCOLATE BALL

Save the date! If you would like to attend our 10th Annual Sydney Chocolate Ball in 2019 please contact the FSHD Global team at events@fshdglobal.org for more information!

2019 SYDNEY CHOCOLATE BALL2019-10-02T18:12:47+10:00