Role and Impact
ABOUT THE FOUNDATION
The FSHD Global Research Foundation focuses on finding treatments and a cure for the debilitating disease Facioscapulohumeral Muscular Dystrophy (FSHD). In doing so, we fund world-class medical research, awareness and education. We are also committed to complete transparency and accountability in our operations.
The Foundation was established in 2007 by Bill Moss AO, a well-known Australian businessman and philanthropist who has FSHD. Since then, we have been addressing the chronic lack of medical funding and awareness of FSHD, both in Australia and globally. Over the past 9 years, the Foundation has committed $8.3 million to fund 40 ongoing medical research grants in 9 countries; the USA, Canada, the Netherlands, Italy, France, Belgium, Spain New Zealand and Australia.
The FSHD Global Research Foundation does not operate like an average not for profit. We allocate 100% of the tax deductible donations we receive to current and future medical research grants. We are also transparent in doing so, offering all donors via the ‘FSHD – Find the Cure’ mobile app the opportunity to track exactly which research programs their money has been allocated and the latest milestones of those programs.
The main sources of our funding for FSHD research are individuals afflicted by FSHD, their friends, supporters, as well as corporate sponsors. All funds donated are invested through careful consideration, guided by our Scientific Advisory Boards, Board Directors and international Research Committees, ensuring FSHD Global remains a leader in discovering worlds best science.
In its truest sense, the FSHD Global Research Foundation is a small organisation doing some very big things!
The Foundation 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 we aim to achieve results as quickly as possible.
ALLOCATION OF TAXABLE DEDUCTIONS
FY 2008-2016: As of 30th June
A 100% MODEL
The FSHD Global Research Foundation is a pure Australian not-for-profit organisation investing 100% of all tax deductible donations funding both basic epigenetics and therapeutic clinical trials, establishing drug developments to prevent muscle wasting. With a global footprint on science, our award winning structure relies on non tax deductible revenue and sponsorships to support all overhead expenses.
FSHD FIND THE CURE APP
Enter your donor number below to view a history of your donations and the research you have supported
FSHD Global is a believer of transparency of all areas of charity, with research and accountability being integral aspects of its organisational culture and structure. We believe there should be an onus on charities to communicate clearly, transparently and consistently about how donations are being spent, which is why in 2014 we built the FSHD - Find the Cure app.
As an Australian first, the App allows every donor since our inception to track their donation and see which research grant(s) their money has been allocated to and provides real time milestones of these grants.
The free award winning ‘FSHD - Find the Cure’ app is an innovative tool allowing every donor to stay up to date with the latest research developments and follow the research projects their donation has contributed to. With easy access from a mobile device or computer, the Foundation can now communicate more directly than ever before through push notifications to its donors. Donors also get the opportunity to meet the researcher who they have supported at annual education programs, and see for themselves just how valuable their donation has been to the research.
As you can see FSHD Global does not operate like your average not - for - profit.
The traditional definition of philanthropy is helping someone you have never met or will never meet. With our commitment to allocate 100% of tax deductible donations to medical research and to allow donors to track their donations in real time via IT applications, we are modernising this concept of philanthropy through accountability and transparency. Our aim is to keep all of our donors and supporters as engaged and as informed as possible, understanding where funding their is going and seeing for themselves the impact they are making.
In August 2014, businessman Babak Moini, who has no connection to FSHD, donated $1 million to the Foundation after reviewing our FSHD Find a Cure IT application. Babak was impressed with the fact that every dollar of his donation would go directly into advancing medical research into the disease. It was also his intention to make his substantial donation as a statement on modernising Australian philanthropy as we know it.
Reinspiring the meaning of giving, Babak chose to go beyond writing a cheque and encouraged Australians young and old to match his million dollars, thereby creating a ‘butterfly effect’ in support of FSHD research.
“I donated a second million dollars to the FSHD Global Research Foundation because it’s run like a business. I can see the real investment I have made and what my money has supported rather than the traditional charity model where you simply need to be content with the feeling of giving.”
In 2014 the Foundation set a new benchmark for the not-for-profit sector with the launch of our “FSHD - Find the Cure” app, an innovative tool that enables donors from around the world to track every dollar they have donated, see the research grants they have sponsored and understand their objectives. The Foundation freely offers this app to all other charities willing to modernise philanthropy and charity in their context.
In a short period of times, FSHD Global has achieved great momentum and incredible advances funding the majority or world leading researchers who work tirelessly on various projects to stop this disease. FSHD is a debilitating muscle wasting disease impacting both adults and children with devastating physical and psychological effect. You may not understand this disease, its severity or limitations, yet what you need to appreciate is the part you play in giving a message of “hope” to families affected by this terrible disease, that something is being done to help fund and find treatments for an ultimate cure.
FSHD is often referred to as a rapidly ageing disease affecting muscles and bones of the body similar to geriatric patients. The Foundation’s research on bone density, anti oxidants and muscle weakening are some areas that have helped give a greater understanding for strengthening other rapidly ageing diseases such as arthritis and osteoporosis.
The stepping stones in finding a cure have seen a better understanding of the basic mechanisms, improvements in diagnostics and collaboration with class medical fraternities around the globe.
As a Foundation we are always looking at ways to expand the amount of research we can undertake. Our investments to date have shown the shift towards clinical trial readiness, giving hope that treatments are within reach.