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.

Babak continues to be a supporter of the FSHD Global by generously donating every year.

“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.

-Babak Moini