News

Bill Moss AM delivers the Kenneth Jenkins Oration at the National Disability Services CEO Conference, Canberra

30 November, 2009

It's Time for a Fair Go

click here to read the speech in its entirety

 

FSHD: The most prevalent form of muscular dystrophy

7 August, 2009

"A 2008 study by Orphanet entitled ‘Prevalence of rare diseases: A bibliographic Study' lists FSHD as the most prevalent form of muscular dystrophy..." click here to read more

 

Entertainment Books to raise money for FSHD!

29 May, 2009

"Entertainment Books are a great way to save money while enjoying a night out or a day with the family.  Each book is full of hundreds of 25-50% and two-for-one offers from popular restaurants, cinemas, hotels, arts and sporting venues.  You will receive over $15,000 in valuable offers, valid through to 1 June each year..." click here to read more 

 

Groundbreaking Online FSHD Survey

6 May, 2009

"The FSHD Global Research Foundation is teaming up with Melbourne based researcher, Dr Triecia Gibney, to develop a study which will explore the quality of life of people with FSHD.

There have been few attempts to quantify how factors such as symptom onset, age at diagnosis, symptom severity and the uncertainty associated with disease progression impact on the quality of life of people affected by FSHD. The research will attempt to address this gap with an online survey giving a voice to people who are living with FSHD all around the world..." click here to read more

 

New partnership with Australia's Biggest Book Group

31 March, 2009

In an exciting development, The FSHD Global Research Foundation will partner with Australia's Biggest Book Group to raise money to find a treatment or cure for FSHD.

With Australia's Biggest Book Group donating all their fundraising efforts to muscular dystrophy care and research including FSHD Global, all FSHD Global friends and supporters are encouraged to visit Australia's Biggest Book Group to find out how reading a book could lead to a cure or treatment for FSHD.

100,000 participants would raise $1 million for muscular dystrophy care and research. 

 

Sydney IVF Stem Cell Breakthrough Gives New Hope To FSHD Cure

19 March, 2009

"Researchers at Sydney IVF and the Australian-based FSHD Global Research Foundation have scored a global break-through, producing the first stem cell line specific to a common form of muscular dystrophy..." click here to read more

 

Jamie Durie and Monica Ellis announced as FSHD Ambassadors

25 Febuary, 2009

"Jamie Durie is an international television identity and highly acclaimed horticulturalist and landscape designer. In 2007 Jamie began hosting the US television series The Victory Garden which runs on PBS. He also appears regularly on The Oprah Winfrey Show where he provides landscape and horticulture advice to Oprah's millions of viewers around the world. In his native Australia, Jamie has starred in such shows as The Outdoor Room, BackYard Blitz and Dancing with the Stars - winning many accolades for his work..." click here to read more..

 

FSHD Global Opens New Sydney Office

30 January, 2009

"The FSHD Global Research Foundation can now be reached on (p) +61 2 8007 7037 (f) +61 2 8007 7038, or at PO Box A296, Sydney South, NSW 1235 Australia.  A big thanks to leading Australian law firm DibbsBarker for allowing the Foundation use of some of its Sydney office space."

  

Macquarie Bank running for a Cure: $29,000 raised for FSHD research

15 August, 2008

"On Sunday August 10th 2008, 169 runners from Macquarie Bank took to the streets as part of the 2008 Sydney City to Surf to raise much needed funds and awareness for FSHD. The runners filled all categories from elite to back of the pack. After the event the runners met at the BB's in Bondi to relax and enjoy a massage and refreshments..." click here to read more...