In this difficult and trying period, things are quickly changing as we move to combat the spread of Coronavirus (COVID-19). As a medical research charity, we are only too aware of the significance of the current situation. Our first and foremost hope is that you and your families are safe and well.

Many of you would have seen the Government announcement of a Public Health Order banning indoor mass gatherings of more than 100 people. In accordance with this ban and with heavy hearts, we regret to announce the postponement of the Sydney Chocolate Ball, which was to be held May 9th at The Star.

The decision has not been taken lightly, but the safety and wellbeing of our guests, sponsors, volunteers and supporters comes first.

COVID-19 will have a major effect not only on our Foundation, but on those living with FSHD. People with FSHD have an impaired immune system and in addition to that have reduced breathing capacity and lung function. Unfortunately, many people with FSHD will end up in hospital and several face a much higher possibility of dying because of this virus.


Each year the Foundation relies on the Sydney Chocolate Ball to fund our mission to find a cure for FSHD. The decision to postpone this year’s Ball will put severe constraint on the Foundations ability to fund world class medical research, education and FSHD biotech, as we pave the way towards clinical trials for this debilitating disease.

Historically 100% of all tax-deductible cash donations have funded medical research. As we hope to maintain this proud point, we are pleased to announce over the coming week we will launch our online Sydney Chocolate Ball platform, where you can still partake in our raffles, silent auction and donation drives.  We thank you in advance for your continued support.

While much of the world is looking to pause operations, our commitment to our mission is stronger than ever. As our global researchers continue their work with as little disruption as possible, we hope you too can continue your support, as we come together as a community in these difficult times.

We look forward to celebrating the Sydney Chocolate Ball with you again soon, when it is safe to do so. In the meantime, stay safe, and stay tuned for our online platform!

All the best,

Natalie Cooney

Managing Director


Our Patrons 

Jamie Durie OAM

International award winning designer & author Jamie Durie OAM started his design practice in 1998. Since then he & his team at Durie Design have received over 33 international design awards with his latest design accolade for his furniture design. Jamie splits his time between design studios in Sydney and Los Angeles, and has worked on many Hotels, Resorts and commercial projects over the last 20 years spanning 17 countries.


Jamie has supported the Foundation from its establishment in 2007 and has played a significant role hosting the Sydney Chocolate Ball every single year. Jamie is a proud Patron of the FSHD Global Research Foundation.

Luke Mangan OAM

Luke Mangan is a leading Australian restaurateur and chef, whose influence on the food and wine industry can been found across five countries, 17 different restaurants as well in the air on Virgin Australia Business Class and at sea, on board five P&O cruise ships.

Luk has supported the Foundation from its establishment in 2007 and has played a significant role in designing an exclusive chocolate inspired menu for the Sydney Chocolate Ball
every single year. Luke is a proud Patron of the FSHD Global Research Foundation.

In its truest sense, the FSHD Global Research Foundation is a small organisation doing some very big things!

What is FSHD?

Facioscapulohumeral muscular dystrophy (FSHD) is a highly complex and progressive muscle wasting disease causing weakening and loss of skeletal muscles. FSHD is one of the most common forms of muscular dystrophy in adults and children. Often referred to as a ‘slow death’ disease, it is aggressive and does not discriminate, affecting young and old from all ethnic groups. There is no treatment. There is no cure.

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