Tania Spagnolini's Contact Details

Tania Spagnolini's Company Details

FSHD Global Research Foundation

, New South Wales, Australia • 1 - 10 Employees
Nonprofit Organization Management

With a commitment to complete transparency and accountability the Foundation is leading the charge to fund world class medical research, awareness and education in its aim to find treatments and a cure for facioscapulohumeral muscular dystrophy. Established in 2007 by Bill Moss AO, a well known Australian Businessman, Philanthropist, and sufferer of FSHD, the Foundation came about due to a chronic lack of medical funding and awareness towards this debilitating disease.With no government funding the Foundation has made up for lost time having successfully collaborated with world class scientists having funded 49 ongoing medical research grants over the past 11 years in the USA, Canada, the Netherlands, Italy, France, Belgium, Spain, Israel, New Zealand and Australia.This life changing research aims to improve the quality of life for people and families suffering from this cruel and misunderstood disease whilst working to find treatment and a cure for FSHD.FSHD Global does not operate like your average not for profit, allocating 100% of tax deductible donations to current and future medical research grants. As the first and only FSHD organisation in Australia, the Foundation views each donated dollar as an investment into finding a cure for a disease that does not discriminate, affecting young and old from all ethnic groups with crushing effect.Our decisions to invest in medical research are made after careful consideration by our scientific committees, who are constantly evaluated and monitored by the Foundation on an ongoing basis.FSHD funding comes from individuals afflicted by FSHD, their friends, supporters and 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 FSHD Global is a little organisation doing some very big things.