FSHD GLOBAL RESEARCH FOUNDATION LTD
Motion by the Hon. MARIE FICARRA agreed to:
1. That this House notes that:
(a) the FSHD Global Research Foundation is an Australian not-for-profit organisation dedicated to finding a treatment and cure for facioscapulohumeral dystrophy [FSHD] and has funded 17 research projects over the past three years in Australia, the United States of America, Netherlands, Italy, France and Belgium, and
(b) facioscapulohumeral dystrophy is one of the most common forms of muscular dystrophy seen in adults according to a recent Orphanet study and new estimates believe it may affect one in 7,500 people.
2. That this House acknowledges and commends:
(a) the founder of the FSHD Global Research Foundation, Mr Bill Moss, for his continued generosity and inspiration in trying to find a cure for facioscapulohumeral dystrophy, and
(b) the foundation's funding through donations from Australia of recent research which has resulted in a revelation that a defect in gene regulation, one never seen before in a human disease, and leads to a common form of muscular dystrophy known as facioscapulohumeral dystrophy, a research discovery that not only gives hope to people with the hereditary crippling condition but may also have an impact on research on other genetic diseases, such as cancer and diabetes.