FSHD News
One of FSHD Global's aims is to promote awareness of FSHD in Australia and around the world. Here are a few media mentions where this has occured.
"Discovery opens door to therapeutic development for FSHD muscular dystrophy" - National Institute of Health (Media Release)
19 August 2010
Scientists are closer to understanding what triggers muscle damage in one of the most common forms of muscular dystrophy, called Fascioscapulohumeral Dystrophy (FSHD)... more
"A Unifying Genetic Model for Fascioscapulohumeral Dystrophy" - Science (Report)
19 August 2010
"Reanimated 'Junk' DNA is found to cause disease" - The New York Times
19 August 2010
"Chocolate ball to melt hearts and raise funds" - The Melbourne Times
28 July 2010
"If you're disabled, just wait outside for 10 years" - The Australian
23 July 2010
Call for Applications - Epidemiology of FSHD Research Project
23 July 2010
FSHD Global is calling for research proposals for a comprehensive population-based study to examine the prevalence and incidence of Fascioscapulohumeral Dystrophy (FSHD) in Australia... click here to read more
FSHD Global on The Footy Show
15 July 2010
FSHD Global appeared on the NRL Footy Show on Thursday, 15 July 2010.
FSHD Sufferer Verbally Abused By Train Driver July 2010 "In early June, a Melbourne man who suffers from FSHD muscular dystrophy was verbally abused by a Victorian Metro Trains driver who blamed him for causing the train to run late...." click here to read more Media Release - Rugby League Referees putting muscle behind muscular dystrophy research
July 2010
"Penrith Panther and City Origin front rower Tim Grant is joining Toyota Cup NRL/NSWRL Referees in supporting research into a form of muscular dystrophy known as facioscapulohumeral dystrophy (FSHD)..." click here to read more
Media Release - Dining with Chocolate for Charity
June 2010
"Award-winning Australian chef and restaurateur, Luke Mangan, has Melbournians drooling in anticipation for his upcoming chocolate banquet, exclusively designed for the inaugural FSHD Lindt Chocolate Ball, to be held on Friday, 6 August 2010 at the Hilton Hotel, Melbourne..." click here to read more
2010 FSHD Global Golf Tournament
June 2010
"Enter a team of 4 players to participate in the two day Tournament to be played at National Championship grade clubs: the New South Wales Golf Club & Terrey Hills Golf & Country Club..." click here to read more
FSHD Clinical Trials
May 2010
"FSHD Global Research Foundation is currently seeking researchers with a serious interest in translating high-quality scientific discoveries into trial therapeutics..." click here to read more
Entertainment Books to Raise Money
2010 - 2011
"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 2011..." click here to read more
FSHD Global Launches Funding Science in Human Dystrophy
1 April, 2010
"FSHD Global invites its supporters to become founding members of Funding Science in Human Dystrophy (FSHD), a new monthly giving program designed for those who would like to become more personally involved with the work of the Foundation..." click here to read more
FORMER Macquarie Bank chief Bill Moss has slammed airports and airlines for the inconsistent way they treat the disabled after a series of experiences
2 December, 2009
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
"Former corporate high flyer devotes life to medical research"
1 October, 2009
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
28 June, 2009
Bill Moss is a former executive director of Macquarie Bank. Bill was an investment banker for 23 years before leaving in 2007 to pursue philanthropic initiatives. Bill has also remained active in the business world and regularly appears in the Australian media providing comment on finance and banking as well as the global economy. Please click here for the full story.
16-17 May, 2009
Backing from a former top banker has spurred efforts to find a treatment for a little-known debilitating condition, writes Lynnette Hoffman. 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
12 March, 2009
Dr. Lucy Burns, the Victorian State President of FSHD Global Research Foundation talks about her personal experience. http://www.youtube.com/watch?v=f1prsksqW8o
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."
The Age: Foundation's research to make up for lost time
30 October, 2008
During his final months as a senior executive at Macquarie Bank, Bill Moss would get home some nights and be unable to take off his shoes. Nor would he be able to walk up stairs, or even pick up a pen. Please click here for the full story.
Monash University: Aiming High
25 September, 2008
A generous gift from a leading business figure will help scientists to investigate the third-most common form of muscular dystrophy. Please click here for the whole story.
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...
Sydney IVF: Bill Moss's philanthropic organisation donates over $400,000 over three years to Australian researchers
18 July, 2007
The FSHD Global Research Foundation has donated over $400,000 to Sydney IVF Limited. In a world first Sydney IVF will derive stem cell lines that will allow for research and drug development into Fascioscapulohumeral Dystrophy. Please click here for the whole story.
For Media Enquiries please contact:
Michael Zahn: +61407922918 or media@fshdglobal.org
| News Headlines |
| 19 August 2010 "Discovery opens door to therapeutic development for FSH muscular dystrophy" - National Institute of Health >more |
| 19 August 2010 "A Unifying Genetic Model for Facioscapulohumeral Muscular Dystrophy" - Science >more |
| 19 August 2010 "Reanimated 'Junk' DNA is found to cause disease" - The New York Times >more |
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