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 [...]

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 [...]

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 [...]

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 [...]

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!

Wyndham Destinations Corporate Surf Challenge “The Wyndham Destinations Corporate Surf Challenge is a great way for industry leaders to inspire and engage staff for an important cause. I encourage you to get on board and join us at this wonderful, fun-filled event to support the FSHD Global Research Foundation [...]