Foundation News

Report on Workshop & AGM, Sunday, 16 August 2009  Northcote Town Hall, Melbourne, Victoria       More than 40 people attended the HSPRF AGM & Workshop, held at the Northcote Town Hall in Melbourne in mid-August.    President Robin Bligh commented that this was a very encouraging turnout and thanked all who helped make… Continue reading Workshop & AGM 2009 + photos

 Newsletters of the UK & USA HSP groups Read about the activities and news in the May 2009 Newslink, the newsletter of the HSP Support Group in the UK, and in the summer edition of Synapse, the newsletter of the SP Foundation in the US.

PRESIDENT’S Report to the Members of the HSP Research Foundation I July 2009 2008/9, our 4th year, represents an important milestone in the history of the HSP Research Foundation. Here are the highlights. Towards a cure Charting a research pathway towards a cure together with the National Centre for Adult Stem Cell Research (NCASCR) and initiating… Continue reading Annual Report 2008 – 2009

 All Victorian HSPers welcome HSPRF President Robin Bligh writes ….. HSP knows no boundaries or borders.  The small global HSP community includes people of every race and nation on earth.  Our even smaller Australian HSP community is spread out over our vast continent. When the HSPRF was formed in 2005, one of the challenges was… Continue reading 2009 Workshop & AGM in Melbourne

 Poor genes the reason Deborah Smith Science Editor Sydney Morning Herald March 10, 2009 AUSTRALIANS have been refused insurance protection because of their genetic make-up, researchers have shown in the first study in the world to provide proof of genetic discrimination. Most cases were found to relate to life insurance. In one instance, a man… Continue reading Australians refused insurance

A piecemeal approach Special Report Isolation is one of the many issues faced by rare disease patients all over the world. In Australia, where 20 million people live in a territory roughly the size of Europe, isolation takes on a very special meaning. This is reinforced by the current lack of a national approach for… Continue reading Rare Diseases in Australia

More conditions are being recognised   by Danny Rose, Medical Writer Sydney Morning Herald February 27, 2009 http://news.smh.com.au/breaking-news-national/rare-genetic-conditions-on-the-rise-20090227-8jn8.html The number of people living with identified rare genetic diseases is on the rise in Australia, because more conditions are being recognised. It is thought that up to 1.5 million Australians are now living with unique, rare… Continue reading Rare genetic conditions on the rise

 Donated $500,000 prize to charity Article by André Picard Toronto Globe and Mail http://www.theglobeandmail.com/servlet/story/RTGAM.20081219.wptnbhaydent/BNStory/nationbuilder2008/home December 22, 2008 When Michael Hayden was named Canada’s "researcher of the year" by the Canadian Institutes for Health Research last month, it was hardly a surprise. He is, after all, one of the world’s most renowned geneticists, having identified the… Continue reading M. Hayden, Canada's 'researcher of year'

 Newsletter of the UK HSP group Read about what the UK support group for HSPers is doing.  Here is their February ’09 Newsletter

Research Agreement finalised The Agreement with the National Centre for Adult Stem Cell Research at Griffith University in Brisbane was finalised on 26 September. HSPRF President Robin Bligh and Professor Alan Mackay-Sim, Director of the National Centre for Adult Stem Cell Research (NCASCR) signed on the dotted line for the year-long pilot study.  There to… Continue reading Stem Cell Pilot Study underway