Join us in the Cole Classic 1km Swim this February! Join our new CEO Kate as she takes to the seas with a team of FSHD champions to raise funds for FSHD Global on 4th February 2018 at the Cole Classic Ocean Swim at Manly. As the perfect ocean swim [...]
International Day of People with a Disability 3 December 2017 Let me start by saying …. Let’s all celebrate International Day of People with a Disability. Inclusion is vital for our wellbeing so let’s make this world a more inclusive place for all those with a disability. My name [...]
FACIOSCAPULOHUMERAL DYSTROPHY LIFESTYLE EDUCATION & EXERCISE PROGRAM (FSHD-LEEP) The FSHD-LEEP program: A collaboration between the University of Canberra and Capital Region Muscular Dystrophy is offering you the opportunity to become a part of a program aimed at highlighting the benefits of exercise and healthy living to people with FSHD. The [...]
I’m 10 years old and I want to tell you what living with FSHD is like for me. How FSHD affects me every day FSHD affects me every day. It stops me having a normal day like everyone else by giving me pains in my shoulders, neck and legs [...]
FSHD Global Research Grant 23 Update In a first for the FSHD field, a study has been published looking closely at the morbidity of low bone density and bone fracture risk in patients suffering from FSHD. The FSHD Global Foundation played a particularly proactive role in supporting this study beyond [...]
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 [...]
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 [...]