Science Events

15 - 21Sep
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FSHD Global Annual Science Week

The Foundation is gathering world-class scientists and clinicians to meet with the FSHD community in Australia and New Zealand. This is your invitation to hear what research is happening, to share your stories about living with FSHD, and to make connections with clinicians and support networks.

Auckland – Friday 15 September 2017

Sydney – Monday 18 September 2017

Brisbane – Tuesday 19 September 2017

Perth – Wednesday 20 September 2017

Melbourne – Thursday 21 September 2017

9th Annual FSHD Global Golf Tournament 2017

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The one day Ambrose Tournament is a fun and friendly environment to play golf with clients, friends or colleagues networking among an echelon of Australian businesses.

How would you like to play?

Corporate Sponsor $10,000

Includes sponsorship for one day

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Silver Sponsor $2,000

Acknowledged as a Single Team by the emcee at the Awards Luncheon.

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Wyndham Resorts Corporate Surf Challenge

Event Information

“Whether you are a competitive surfer or just like to catch a wave, the surf challenge is always such a fun-filled day. Ditch the office and hit the beach and support a really great cause!” Layne Beachley

9th Annual Sydney Chocolate Ball

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We are so excited to announce the Sydney Chocolate Ball will be returning on Saturday 16 June 2018. Traditionally a sold out event, tables and tickets are now available and can be reserved by contacting the Foundation on 02 8007 7037 or More details to come soon.



World FSHD Day

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World FSHD Day

World FSHD Day is held on June 20 and aims to raise public awareness for FSHD. Few members of the public have ever heard of FSHD, and many affected individuals don’t know that they have the condition. This international day aims to bring awareness of this debilitating disease to the general public and decrease the misdiagnoses within the medical industry not only in Australia but across the globe. Join people all around the world as we come together on June 20th and unite to raise awareness and find a cure for FSHD.

Host a Corporate Event

Raising funds through your choice of event has never been more fun or simple! Your commitment to partner with us and host your own Corporate Event will help fast tracking a cure for FSHD.

We will work with you to support your event, such as a golf day, corporate luncheon, sports or office event making it easy for your employees and clients to get involved, and help raise awareness and funds towards to help improve the quality of lives of individuals and families affected by this disease.

Be inspired and enquire about partnering with us for your next event.

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Stay up to date and educated through real life stories, speeches and seminars.


Do you have an FSHD topic or story that you’d like to share?

We share 'Progress' our monthly newsletter with our community at large. If you have a story, questions or topics of interest you’d like read about, please contact us, as we’d love to hear from you.

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FSHD Educational Toolkits


The Foundation is thrilled to release a range of educational toolkits for patients, GP's and Allied Health Professionals. Our goal is to empower our community when championing for support within the medical world.

ASX Thomson Reuters Charity Foundation Art Union 2017


Proceeds from the ASX Thomson Reuters Art Union tickets go towards supporting FSHD Global Research Foundation.

FSHD Global publishes clinical practice considerations for FSHD


In September 2015 FSHD Global convened a workshop of 13 leading international and Australian clinicians to expand on the US guidelines.(2) The guideline covers diagnosis and management of FSHD and sets out the standard of care that people with FSHD in Australia should expect from their care team.

AJ Gallagher Charity Golf Day


AJ Gallagher hosted a Charity Golf Day in October at Killara Golf Club. The generosity of players and guests saw nearly $45,000 raised to support the Monica Ellis Children's Medical Research Grant. We are so grateful for their support into our cause.

Madison Marcus Golf Tournament raises over $60,000!


On the 17th of April, FSHD Global held its first Corporate Partner Golf Day, partnering with Madison Marcus Law Firm and the Fox Hills Golf Club. The day exceeded all expectations raising over $60,000 for much needed research into the disease.