Getting the support you and your health professionals need The Foundation is thrilled to release a range of educational toolkits for patients, GP’s and Allied Health Professionals. Our goal is to empower our community when championing for support within the medical world. In September 2015 FSHD Global convened a workshop [...]
Awareness is key. On 28 February 2017, the tenth year of Rare Disease Day will see thousands of people from all over the world come together to advocate for greater research into rare diseases. Rare Disease Day has, and continues to collaborate with organisations globally in order to put on [...]
We are proud once again to be involved in the ASX Thomson Reuters Charity Foundation art union. Tickets sold will go towards raising funds for medical research into finding treatments and a cure for FSH Muscular Dystrophy. 1st Prize: New Lexus RX200T valued at $80,449* The dynamic RX200t delivers [...]
Facio Therapies Announcement Facio Therapies announced today that oral treatment with one of Facio’s lead candidates results in significant reduction of the human muscle-toxic DUX4 protein in mice engrafted with human FSHD-affected muscle cells. Facio is the first in the FSHD field to achieve proof of principle in an [...]
A major issue for FSHD FSHD is a condition that affects the function of skeletal muscles. However, this description does not include the myriad of other symptoms that people with FSHD are forced to deal with as the condition progresses. Fatigue is one of these symptoms. Fatigue is defined [...]
How to tell the good from the not so good. There are literally thousands of scientific articles published every year around the world by research groups. Inevitably some will be great and others will not. Even a trained scientist can find interpreting research difficult especially with so many studies [...]
Facio-therapies recently announced a breakthrough development in FSHD drug discovery. What is it? Facio-therapies have developed a high through-put screening platform that uses muscle cells from people with FSHD and actually measures DUX4 protein levels. Why is it a breakthrough? Most screening platforms use cells that are not specific [...]
The Latest Study The role of exercise in muscular dystrophy has long been controversial and advice has oscillated from promoting exercise to counselling people with muscular dystrophy to avoid it entirely. A recent review of the available evidence concluded that exercise was not harmful for people with FSHD, but was unable [...]
FSHD Global has been recognised as a Winner for Outstanding Achievement in the Australian Charity Awards 2016. We are thrilled to be recognised as a Winner for Outstanding Achievement in the 2016 Australian Charity Awards. This incredible award recognises FSHD Global’s commitment to addressing medical research into Facioscapulohumeral Muscular [...]
Lavender Blues Harsh reflections and hindsight plainly revealed now how my recent twilight nightmare of an accident was such a scary but avoidable experience and one I could very well have done with-out. This dicey state of affairs occurred when I endeavored to lean over and retrieve a pair [...]