“His brain is making appointments that his body can’t keep.”
The late award-winning British journalist, Ian Wooldridge from the Daily Mail newspaper, wrote these words after watching Rod Laver, the all-conquering Australian tennis player toward the end of his career which included winning 11 grand slams including Wimbledon, the Australian Open, French Open and the U.S. title multiple times
There are parallels between this story when the brain is functioning at 100 percent but the muscles in your body are not – something that can also strike people at a much younger age. While Laver’s situation was due to the fact he was nearing the end of long career it shines a light on a disease that affects 1 in 7500 Australians who live with Facioscapulohumeral (FSHD), a genetic muscle-wasting disease. FSHD causes the weakening and loss of skeletal muscle in adults and children, robbing them of the ability to walk, talk, smile, blink or even eat
Father-daughter duo Bill Moss AO and Natalie Cooney are spearheading a new future for muscular dystrophy diseases through the FSHD Global Research Foundation (FSHD Global) – a not-for-profit organisation founded by businessman and philanthropist Bill Moss AO in 2007, and chaired by his daughter Natalie Cooney. The charity has a clear mission to fund medical research to find treatments and ultimately a cure for Facioscapulohumeral Muscular Dystrophy (FSHD).
Prematurely diagnosed with the muscle-decaying disease at age 30, Moss founded the FSHD Global Research Foundation. Moss established the Foundation with a vision to find treatments and a cure for FSHD, including research into muscle wellness, repair and technology that would improve muscle function for everyone. At age 51, Moss retired from Macquarie Bank due to his worsening battle with FSHD – a 22-year career cut short.
The highly respected Moss works with his daughter, Natalie Cooney as Chair of the Foundation, to lead the campaign. Cooney brings unparalleled passion to the field, serving on multiple global science advisory and biotech boards while advancing scientific strategies for FSHD. Their shared dedication to the cause amplifies the impact of their work through the foundation.
In addition to their work at FSHD Global, Moss and Cooney work together at the family business Boston Management. The two make a great and powerful duo, made evident by their success across FSHD Global and Boston Management. Since its founding in 2007, the FSHD Global Research Foundation has committed $23 million to ongoing medical research on muscular dystrophy, with the aim of finding a cure.
One of their standout initiatives is the globally renowned Sydney Chocolate Ball, which has become the world’s largest fundraising event for FSHD research. The event, now in its 13th year, returned in September 2024 to raise critically needed funds for research. Over the years, the Ball has helped fund over $13 million in 66 external direct medical research grants in 11 countries. The Chocolate Ball is inspired by the Foundation’s mission to “give life to muscles” and chocolate’s high antioxidant content.
The Foundation receives no government funding; their impact is driven purely by their philanthropic and corporate community.
With his health continuing to deteriorate, Bill Moss is handing over the baton to his daughter to ensure the legacy of this foundation looks to create lasting changes for those living with FSHD.
