FSHD http://www.fshdglobal.org Home Wed, 22 Feb 2012 06:44:55 +0000 en hourly 1 http://wordpress.org/?v=3.2.1 Bill Moss releases memoirs “STILL WALKING” http://www.fshdglobal.org/http:/www.fshdglobal.org/about http://www.fshdglobal.org/http:/www.fshdglobal.org/about#comments Mon, 21 Nov 2011 23:43:27 +0000 admin http://www.fshdglobal.org/?p=1721 Continue reading →]]> [November 2011] These memoirs are the inspirational, moving, blunt and at times very funny account of how a senior and seemingly all-powerful Macquarie banker struggled for years through physical discomfort, pain and the many barriers thrown in the path of people with physical disabilities, not just to rise to the international heights of a notoriously difficult profession but also gradually to face and come courageously to terms with his disability.

All profits from book sales to be donated to FSHD Global Research Foundation and Fighting Chance Australia.

To purchase your copy of the book please go to www.stillwalking.com.au or email admin@fshdglobal.org.

dr.cARON

 

]]> http://www.fshdglobal.org/http:/www.fshdglobal.org/about/feed 0 http://www.fshdglobal.org/http:/www.fshdglobal.org/about http://www.fshdglobal.org/http:/www.fshdglobal.org/about#comments Mon, 10 Oct 2011 02:26:13 +0000 admin http://www.fshdglobal.org/?p=2560 Continue reading →]]> FSHD Global Golf Tournament 2011, 29 September, 2011


We would like to thank all the golfers who attended the first round of the annual FSHD Global Research Foundation golf tournament that was held at the Prestigious Terrey Hills Golf and Country Club on the 27th September. Without your support the Foundation would not be able to fund the research that we hope will one day find a treatment and cure for FSHD.

Winners on the day were the Steve Moss team ahead of Credit Suisse in second position and Green Resources Group third.

We look forward to the second day of the tournament that will be held at St, Michael’s Golf Course, La Perouse.

Thank you to all the sponsors who included;

  • Platinum Sponsors: Moss Capital and Gelionson;
  • Gold Sponsors: Wyndham Vacation Resorts Asia Pacific, Genea, ZMM, BBX, Property Investment Research and Steve Waugh Foundation;
  • Silver Sponsors: Energy Action, Green Resources Group
  • Teams: Boston Body Technology, Men of League Foundation, Credit Suisse, Souths Sydney Football Club, Steve Moss, KPMG & Oakstand Property.
]]> http://www.fshdglobal.org/http:/www.fshdglobal.org/about/feed 0 One-off donations http://www.fshdglobal.org/http:/www.fshdglobal.org/about http://www.fshdglobal.org/http:/www.fshdglobal.org/about#comments Tue, 20 Sep 2011 06:44:48 +0000 admin http://www.fshdglobal.org/?p=2487 Continue reading →]]> One-off donations

There are three easy ways to donate to FSHD Global using a credit card, direct debit or cheque.

You can also donate to a specific person or event that is raising funds for FSHD Global, such as a friend or family member competing in a sporting activity. Please have a look at the current list of FSHD fundraising activities.

]]> http://www.fshdglobal.org/http:/www.fshdglobal.org/about/feed 0 Inaugural Bill Moss AM Fellowship http://www.fshdglobal.org/http:/www.fshdglobal.org/about http://www.fshdglobal.org/http:/www.fshdglobal.org/about#comments Thu, 15 Sep 2011 02:38:01 +0000 admin http://www.fshdglobal.org/?p=1844 [September 2011] Professor John Rasko, Chairman of the FSHD Global Scientific Grants Review Committee, presented the inaugural Bill Moss AM Fellowship to Dr. Leslie Caron at the FSHD Lindt Chocolate Ball held recently at the Four Seasons Hotel.
[read more]

]]> http://www.fshdglobal.org/http:/www.fshdglobal.org/about/feed 0 Dr. Gabellini’s Research Published http://www.fshdglobal.org/http:/www.fshdglobal.org/about http://www.fshdglobal.org/http:/www.fshdglobal.org/about#comments Wed, 14 Sep 2011 06:30:46 +0000 admin http://www.fshdglobal.org/?p=2399 [September 2011] The results of Dr. Davide Gabellini’s work on a treatment for FSHD were released this August in an Advanced Online Publication from the highly regarded scientific journal Molecular Therapy. His results are extremely important for several reasons.
[read more]

]]> http://www.fshdglobal.org/http:/www.fshdglobal.org/about/feed 0 Evaluation of Synthetic Genes for Inhibition of Faulty Genes in FSHD http://www.fshdglobal.org/http:/www.fshdglobal.org/about http://www.fshdglobal.org/http:/www.fshdglobal.org/about#comments Tue, 13 Sep 2011 02:37:40 +0000 admin http://www.fshdglobal.org/?p=2263 Continue reading →]]> [September 2011] FSHD is a common form of muscular dystrophy in adults, affecting about seven in 100,000 people, causing a progressive wasting of muscles in the upper body. The cause is thought to be the activation of a normally ‘silent gene’, called DUX4. [read more]

]]> http://www.fshdglobal.org/http:/www.fshdglobal.org/about/feed 0 Presentation to Victorian FSHD Branch Members http://www.fshdglobal.org/http:/www.fshdglobal.org/about http://www.fshdglobal.org/http:/www.fshdglobal.org/about#comments Thu, 08 Sep 2011 07:03:38 +0000 admin http://www.fshdglobal.org/?p=2080 Continue reading →]]> [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.

]]> http://www.fshdglobal.org/http:/www.fshdglobal.org/about/feed 0 FSHD Queensland Group Forms http://www.fshdglobal.org/http:/www.fshdglobal.org/about http://www.fshdglobal.org/http:/www.fshdglobal.org/about#comments Thu, 08 Sep 2011 05:31:38 +0000 admin http://www.fshdglobal.org/?p=2007 Continue reading →]]> [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.

]]> http://www.fshdglobal.org/http:/www.fshdglobal.org/about/feed 0 http://www.fshdglobal.org/http:/www.fshdglobal.org/about http://www.fshdglobal.org/http:/www.fshdglobal.org/about#comments Fri, 05 Aug 2011 06:38:33 +0000 admin http://www.fshdglobal.org/?p=1430 Continue reading →]]> Melbourne Lindt Chocolate Ball, 30 July, 2011

Thanks to the Victorian State Branch volunteers led by Lucy Burns and Les Jones over 300 people attended and enjoyed the FSHD Lindt Chocolate Ball and raised $35,000 for research. A great effort by a dedicated group of supporters.



Thank you to everyone who contributed to the night including FSHD sufferer Triecia Gibney who gave a personal account of living with FSHD in a family. Triecia and three of her children have FSHD. Read her story here. Dr. Paul Gregorevic gave an insight into what FSHD is and how the Foundation is approaching research into finding a treatment and cure.

The 2011 Melbourne FSHD Lindt Chocolate Ball enjoys the generous support of Lindt & Sprungli and Luke Mangan.

  • Platinum Sponsors: MossCapital
  • Gold Sponsors: Astra Mining, David Brown Graphics, Maikhao Dream Resort, Mulpha/Hayman, The Karma Royal Group, Wyndham Vacation Resorts Asia Pacific
  • Silver Sponsors: Intramar, Mandarin Oriental, KPMG, ZMM, Pacific Shopping Centres.
]]> http://www.fshdglobal.org/http:/www.fshdglobal.org/about/feed 0 FSHD Global Research Foundation Supports Ground Breaking New Research on Potential Genetic Therapies for FSHD http://www.fshdglobal.org/http:/www.fshdglobal.org/about http://www.fshdglobal.org/http:/www.fshdglobal.org/about#comments Mon, 11 Jul 2011 05:57:23 +0000 admin http://www.fshdglobal.org/?p=2179 Continue reading →]]> 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]

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