FSHD Global Research Foundation

FSHD Global Research Foundation has been recognised for Outstanding Achievement in The Australian Charity Awards 2020. The Australian Charity Award for Outstanding Achievement [OAA] recognises charitable organisations that have achieved outstanding results through initiatives that have significantly benefited charitable causes.

The FSHD Global Research Foundation (FSHD Global) focuses on finding treatments and a cure for the debilitating muscle wasting disease Facioscapulohumeral Muscular Dystrophy (FSHD). In doing so, they fund world-class medical research, awareness and education. FSHD Global are also committed to complete transparency and accountability in our operations. They do not operate like your average not for profit, remaining at the forefront of innovation, transparency, accountability and philanthropic excellence. Their organisation’s culture, structure and operating environment are innovative and entrepreneurial when benchmarked against their peers in the Australian not-for-profit sector. Established in 2007 by businessman, philanthropist and sufferer of FSHD, Bill Moss AO, FSHD Global has dramatically advanced the landscape of research into FSHD, influencing worldwide medical breakthroughs, human clinical trials and potential treatments for this misunderstood disease – impacting a global community of more than 1 million sufferers across the globe. The Foundation was established in response to the slow pace and lack of global research into the condition and the negative effect this was having on people living with FSHD, their families and friends. FSHD Global runs a pure charity model, with 100% of every tax deductible donation being allocated into world class medical research and medical education – positioning itself to find a cure as quickly as possible.

The Foundation is constantly finding ways to revolutionise transparency standards within the philanthropic sector, having launched a world first mobile app ‘FSHD Find the Cure’, enabling users to track precisely how and where their charitable donations are allocated, no matter how large or small. The donor is then able to follow the progress of the grant and be confident that their donation is having a direct impact on research. FSHD Global is committed to advancing global medical research, education and collaboration to improve quality of life and ultimately find a cure for Facioscapulohumeral Dystrophy. Through transparency, accountability, good governance and pure passion they aim to achieve results as quickly as possible. The Foundation aims to increase awareness and fund national and international research to undertake both clinical and basic research projects that can lead to identifying the cause and a future cure for FSHD. It also aims to increase knowledge and awareness of FSHD among medical practitioners, researchers, patients, donors and the general community. The Foundation will continue to encourage Australian and international researchers to participate in its scientific committees to identify evaluate and monitor the research it funds.

FSHD Global is an award-winning charity for innovation and outstanding performance. The Sydney Chocolate Ball was built as a high end, elaborate charity gala dinner, catering to wow its audience, independent of the cause. It is their innovation and creativity that leads their audience to passively learn about FSHD Global, the disease and the desperate quest to find a cure. The Sydney Chocolate Ball is the world’s largest fundraiser for FSHD. Since its inception in 2010 the Sydney Chocolate Ball has tantalized the senses of thousands of guests from Australia and beyond. Though hard work, commitment and creative execution, this event is sold out year after year. The 2019 Sydney Chocolate Ball was attended by 562 guests and raised over $1.2 million for medical research, dramatically advancing their global footprint towards a cure. FSHD Global work very closely with their corporate partners to ensure that they feel like they are getting just as much out of the relationship by participating in their fundraiser events. It has been through the ongoing success of the Sydney Chocolate Ball that has allowed the Foundation to fund 47 medical research grants, worth over $10.7 million dollars while at the same time raising much needed awareness for the disease. Beyond financial success, and advancement of medical research, the legacy of the Ball is what inspires those in the community living with FSHD – it provides comfort and hope that something is being done to fight this disease. This is the true benefit and social impact behind the event, as FSHD edge closer to a cure.

For further information on FSHD Global Research Foundation visit fshdglobal.org

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