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.