FSHD Global Research Foundation has been recognised as Charity of the Year (CHY) in The Australian Charity Awards 2017. Now in their fifth year, The Australian Charity Awards are a partner program of The Australian Business Awards and have been established to identify, recognise and reward organisations for the exceptional work undertaken through their charitable initiatives.

“We are honoured to be recognised as the Australian Charity of the Year. This fantastic achievement highlights the calibre of the FSHD Global Research Foundation and recognises our innovation, transparency and commitment to funding world’s best medical research and education of FSH muscular dystrophy on a global scale.

Being praised for our 100% donor model, which sees every tax deductible dollar directed towards research, shed’s light on the importance of transparency and accountability within the not for profit sector. Pairing today’s technology with traditional modes of philanthropy gives the donor journey a stronger sense of impact and satisfaction, as we strive towards an ultimate cure, “said FSHD Global Research Foundation, Natalie Moss, Managing Director said.

This prestigious accolade will act as a tool for the Foundation to obtain exposure, recognition and acknowledgement for our distinctive & innovative 100% charity model on a prominent and far-reaching scale. This will also provide a platform to increase the general public awareness for this genetic disease.

FSHD Global Research Foundation is honoured and humbled to be awarded this award. As a small organisation built on a strong culture of pure passion and determination, we rely on the generosity, time and expertise of our community to continue to excel. We are fortunate to have an incredible support network made possible by our non-remunerated Board of Directors, Patrons, Ambassadors, staff and volunteers. This award is a testament to all of our supporters who have given their time and money to us with the confidence we will remain driven and accountable in our quest to find treatments and a cure for Facioscapulohumeral muscular dystrophy (FSHD).

“Today, charitable organisations are facing ongoing challenges in their operating environment. Measuring the performance and impact of their initiatives has become an important part of operations for the third sector,” Australian Charity Awards Program Director, Ms Tara Johnston, said.

“In this context, the sustainability of charities depends more than ever on their performance management and their ability to innovate. Being innovative has the potential to elevate charitable organisations in their efforts to achieve a long-term social impact and financial sustainability.

“The Australian Charity Awards 2017 are proud to acknowledge the role of charitable organisations in Australia and commend FSHD Global Research Foundation for being recognised as Charity of the Year,” Ms Johnston added.

About The Foundation:

Established in 2007, FSHD Global Research Foundation is committed to advancing global medical research, education and collaboration to improve the quality of life and ultimately find a cure for Facioscapulohumeral Dystrophy (FSHD). We do not operate like your average not-for-profit. We allocate 100% of all cash tax deductible donations to current and future medical research investment, grants and education whilst the Foundation’s operations are supported by non-tax deductible sponsorships. With no government support, this pure charity model offers great transparency and accountability to our mission.

For further information about FSHD Global Research Foundation go to fshdglobal.org

About the Disease:

Facioscapulohumeral muscular dystrophy or FSHD is a highly complex, progressive muscle wasting disease. It does not discriminate, affecting the lives of men, women and children from all walks of life. The Global footprint of this condition is enormous. Worldwide, FSHD affects the lives of an estimated 1 million people, a figure that does not take into account the effect FSHD has on the friends and family of the person affected.

Despite being considered one of the most common forms of muscular dystrophy in adults and children there are no treatments and no cure.

FSHD is commonly associated with progressive weakening of facial, shoulder and upper arm muscles. However, this explanation does little justice to a disease that can rob people of their ability to walk, talk, smile or even eat. The progression often comes in bursts with sudden deterioration followed by periods of no change.