News Archive
8 September 2011
Presentation to Victorian FSHD Branch Members
Presentation to Victorian FSHD Branch Members
[September 2011] The Genetic Support Network of Victoria kindly sponsored a meeting for the Victorian FSHD Branch where international FSHD researchers Professor Melanie Ehrlich and Professor Alexandra Belayew updated members on their FSHD research. Melanie and Alexandra also presented to the NSW State Branch members. Both meetings proved to be great forums and allowed FSHD sufferers to ask many questions about where FSHD researching was heading.
8 September 2011
FSHD Queensland Group Forms
FSHD Queensland Group Forms
[September 2011] Recently four FSHD sufferers and a carer met in Brisbane to share their stories about life with FSHD. The meeting provided a fantastic forum for sufferers in Queensland to come together and learn more information about FSHD and its effects. The group would like to continue to meet and recruit new members. If you are interested in attending the next meeting please contact Leona Kelly on 0402 771109 or send an email to leona.kelly@banorapt.com.au.
11 July 2011
FSHD Global Research Foundation Supports Ground Breaking New Research on Potential Genetic Therapies for FSHD
FSHD Global Research Foundation Supports Ground Breaking New Research on Potential Genetic Therapies for FSHD
Two exciting new papers have been published recently on possible approaches for treating FSHD using a form of genetic treatment called RNA interference (RNAi). The details emerged within one month of each other in the highly regarded international journal Molecular Therapy. The two complementary studies were performed by different teams of scientists: the Harper Laboratory, at The Ohio State University and Nationwide Children’s Hospital in Columbus, Ohio, with a collaborator in Modena, Italy; and the Gabellini and Chamberlain laboratories, in Milan, Italy, and Seattle, Washington, respectively. [read more]
24 May 2011
MEDIA RELEASE: CHOCOLATE EXTRAVAGANZA ARRIVES IN SYDNEY
MEDIA RELEASE: CHOCOLATE EXTRAVAGANZA ARRIVES IN SYDNEY
Tuesday 24 May, 2011
On Saturday the 18th of June, the ‘FSHD Lindt Chocolate Ball’ will be held in Sydney for the first time, with Jamie Durie as MC and award-winning chef Luke Mangan cooking a chocolate infused three-course menu.
To be held at the Four Seasons Hotel, George St, The Rocks, the event promises guests a chocolate gourmet experience rivalling that of any top restaurant, with Lindt, premium seafood purveyor JOTO, and renowned butcher Victor Churchill, supplying delicacies for the evening.
The night will also play host to the premiere of the Australian Chocolate Couture Awards, offering designers the opportunity to create an outfit inspired by the Ball’s theme of chocolate. The Awards will be judged on the evening by renowned fashion industry identities Justine Cullen (Editor of Shop Til You Drop magazine), Nikki Hager (Founder of PeepToe) and designer Peter Morrissey.
“It will be fascinating to experience how Luke Mangan combines Lindt chocolate with Australia’s highest quality meat, seafood and produce to dazzle attendees,” said FSHD Global Research Foundation Director, Natalie Moss.
“Whilst being entertained by Luke Mangan and Jamie Durie, the fashion show will give attendees a close look at Australia’s up and coming designers and their chocolate inspired garments,” said Natalie Moss.
“We are looking forward to a fabulous evening of entertainment for chocoholics and hope that Sydney gets behind the Ball and the cause it is supporting,” continued Natalie Moss.
Funds raised from the Ball will support the FSHD Global Research Foundation’s quest to find a treatment and cure for Facioscapulohumeral dystrophy, or FSHD, a common form of muscular dystrophy which causes progressive and irreversible weakness and wasting of muscles in the body.
“This evening is both a chance for people to find out more about what the Foundation is working to achieve, as well as a celebration of the significant advances in FSHD research that have been made globally over recent years,” concluded Natalie Moss.
Over the past three years the FSHD Global Research Foundation has funded eleven medical research projects in the USA, Netherlands, France, Italy, Belgium and Australia, offering hope to thousands of FSHD sufferers and their families around the world.
Individual tickets are priced at $250 (inclusive of GST) and various sponsorship packages are available.
Tickets can be purchased and sponsorship information can be found at the FSHD Global website www.fshdglobal.org or by contacting (02) 8007 7037.
*Ends*
Media Contact: Katie Higgins, katie@zmmgroup.com or 0405415005
10 May 2011
FSHD Global Director Dr. Lucy Burns talks FSHD on ABC Radio
FSHD Global Director Dr. Lucy Burns talks FSHD on ABC Radio
10 May 2011
FSHD Global Director Dr. Lucy Burns talked to ABC Radio about FSHD, her diagnosis and the effect the rare disease has had on her life. The program was aired to coincide with the Rare Disease Symposium held in Fremantle, WA.
Click here to listen to the interview.
10 May 2011
Buy an Entertainment Book and support FSHD
Buy an Entertainment Book and support FSHD
10 May 2011
The Entertainment Book is a great way to save money while enjoying a night or day out with the family. Containing over $15,000 in valuable offers that can be used all year round, purchase your 2011 – 2012 Entertainment Book through us and 20 per cent is donated to FSHD Global.
Click here to find out how to purchase your 2011 - 2012 Entertainment Book.
4 May 2011
House of Representatives - Answers to questions on Muscular Dystrophy
House of Representatives - Answers to questions on Muscular Dystrophy
25 November 2010
Read the questions asked by Mr Scott Morrison, MP, regarding Government funding for muscular dystophy and FSHD, and the responses from Ms Nicola Roxon, MP, the Minister for Health and Ageing.
4 May 2011
Newsletter Article (Ed 4) - Dux4 gene heralds new progress in the cause of FSHD in humans
Newsletter Article (Ed 4) - Dux4 gene heralds new progress in the cause of FSHD in humans
9 November 2010
Read the full outline of the article that appeared in Edition Four of the FSHD Global newsletter.
4 May 2011
Newsletter Article (Ed 4) - Wellstone FSHD Meeting - May 2010
Newsletter Article (Ed 4) - Wellstone FSHD Meeting - May 2010
9 November 2010
Read the full outline of the article that appeared in Edition Four of the FSHD Global newsletter.
4 May 2011
FSHD Global Newsletter - Edition 4
FSHD Global Newsletter - Edition 4
9 November 2010
The fourth edition of FSHD Global's newsletter, Progress, is now available.
4 May 2011
"Wanted: the power and the passion" - The Australian Financial Review
"Wanted: the power and the passion" - The Australian Financial Review
9 November 2010
4 May 2011
MEDIA RELEASE - World first stem-cell bank paves the way for research breakthroughs
MEDIA RELEASE - World first stem-cell bank paves the way for research breakthroughs
11 October 2010
Sydney IVF and the Australian-based FSHD Global Research Foundation have established the world’s first Facio-Scapulo-Humeral Dystrophy (FSHD) human embryonic stem cell bank, which will aid medical research into one of the world’s most common forms of muscular dystrophy...More
4 May 2011
FSHD Global partners with Champagne for Charity
FSHD Global partners with Champagne for Charity
7 October 2010
The FSHD Global Research Foundation is excited to announce that it has partnered with Champagne for Charity, a newly formed organisation for women based in Sydney’s metropolitan area... More
4 May 2011
Interest in FSHD Continues to Grow
Interest in FSHD Continues to Grow
22 September 2010
The last four months has seen the FSHD Global website receive visitors from a staggering 62 different countries around the world... More
4 May 2011
"Discovery opens door to therapeutic development for FSHD muscular dystrophy" - National Institute of Health (Media Release)
"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 Facioscapulohumeral Dystrophy (FSHD)... More
4 May 2011
"A Unifying Genetic Model for Facioscapulohumeral Dystrophy" - Science (Report)
"A Unifying Genetic Model for Facioscapulohumeral Dystrophy" - Science (Report)
19 August 2010
4 May 2011
"Reanimated 'Junk' DNA is found to cause disease" - The New York Times
"Reanimated 'Junk' DNA is found to cause disease" - The New York Times
19 August 2010
4 May 2011
"Chocolate ball to melt hearts and raise funds" - The Melbourne Times
"Chocolate ball to melt hearts and raise funds" - The Melbourne Times
28 July 2010
4 May 2011
"If you're disabled, just wait outside for 10 years" - The Australian
"If you're disabled, just wait outside for 10 years" - The Australian
23 July 2010
4 May 2011
Call for Applications - Epidemiology of FSHD Research Project
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 Facioscapulohumeral Dystrophy (FSHD) in Australia...More
4 May 2011
FSHD Global on The Footy Show
FSHD Global on The Footy Show
15 July 2010
FSHD Global appeared on the NRL Footy Show on Thursday, 15 July 2010.
4 May 2011
FSHD Sufferer Verbally Abused By Train Driver
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...."More
4 May 2011
Media Release - Rugby League Referees putting muscle behind muscular dystrophy research
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)..." More
4 May 2011
Media Release - Dining with Chocolate for Charity
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..." More
4 May 2011
2010 FSHD Global Golf Tournament
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..." More
4 May 2011
FSHD Clinical Trials
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..." More
4 May 2011
Entertainment Books to Raise Money
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..." More
4 May 2011
FSHD Global Launches Funding Science in Human Dystrophy
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..." More
4 May 2011
FORMER Macquarie Bank chief Bill Moss has slammed airports and airlines for the inconsistent way they treat the disabled after a series of experiences
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
4 May 2011
Bill Moss AM delivers the Kenneth Jenkins Oration at the National Disability Services CEO Conference, Canberra
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
4 May 2011
FSHD: The most prevalent form of muscular dystrophy
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..." More
4 May 2011
Talking Business - Bill Moss
Talking Business - Bill Moss
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. " More
4 May 2011
Bring on the research muscle
Bring on the research muscle
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. " More
4 May 2011
Groundbreaking Online FSHD Survey
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..." More
4 May 2011
New partnership with Australia's Biggest Book Group
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.
4 May 2011
Sydney IVF Stem Cell Breakthrough Gives New Hope To FSHD Cure
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..." More
4 May 2011
Media Release - Dining with Chocolate for Charity
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..." More
4 May 2011
Dr. Lucy Burns on 7 News
Dr. Lucy Burns on 7 News
12 March, 2009
"Dr. Lucy Burns, the Victorian State President of FSHD Global Research Foundation talks about her personal experience. " More
4 May 2011
Jamie Durie and Monica Ellis announced as FSHD Ambassadors
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..." More
4 May 2011
FSHD Global Opens New Sydney Office
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."
4 May 2011
The Age: Foundation's research to make up for lost time
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." More
4 May 2011
Monash University: Aiming High
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. " More
4 May 2011
Macquarie Bank running for a Cure: $29,000 raised for FSHD research
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..." More
4 May 2011
Sydney IVF: Bill Moss's philanthropic organisation donates over $400,000 over three years to Australian researchers
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 Facioscapulohumeral Dystrophy. " More
23 March 2011
Call for Expression of Interest for Research Proposals
Call for Expression of Interest for Research Proposals
28 February 2011
FSHD Global Research Foundation is approaching 2011 with a fresh outlook. A number of exciting research breakthroughs marked 2010, including the rising prominence of Dux4 in FSHD. We remain committed to supporting the efforts to find a treatment for Facioscapulohumeral Dystrophy and through this deliver on our promise to the Foundation's supporters, many of whom are long-term FSHD sufferers.
This year we are calling for applications for research projects globally as well as in Australia. Please read more [link to Call for Applications] about how to submit a research proposal.
23 March 2011
“Claire Anderson – A Need for a National Disability Insurance Scheme (NDIS)”
“Claire Anderson – A Need for a National Disability Insurance Scheme (NDIS)”
26 January 2011
Read more23 March 2011
"A rallying call from the heart" - The Australian Financial Review
"A rallying call from the heart" - The Australian Financial Review
25 January 2011
Bill Moss AM, Chairman of the FSHD Global Research Foundation, recently appeared in an article in the Australian Financial Review, entitled ‘A rallying call from the heart’ in which he condemns the lack of employment of people with disabilities at all levels (but especially board and executive levels) in Australia’s corporate sector.
The article talks about the rising public spending that relates to disabilities and sickness (which currently makes up 15 per cent of Australia’s total public spend), with an increased number of disabled people claiming benefits, and total support payments for the next four years recently revised upwards by $900 million.
As the Government awaits the findings of a Productivity Commission report which will look at the benefits of replacing the current system of disability services with a new national scheme, Bill argues that in order to make a difference in the lives of the disabled, they need to be employed.
Bill proposes that the Government consider imposing a target on the top 500 ASX companies that people with a disability comprise three to five per cent of their workforce, with taxes to be used as a penalty or reward for failing to reach or exceeding the quota.