HSPRF News

UK Newslink & USA Synapse

Posted - August 2010 in HSPRF News

Newsletters of the UK & USA HSP groups

Fundraising for everyone

Posted - March 2010 in HSPRF News

YOU can be a fundraiser!

Find HSPers near you

Posted - in HSPRF News

Social network up & running

Sydney Workshop 2009

Posted - December 2009 in HSPRF News

HSPRF Workshop, Sydney, 25 October 2009 37 members of the HSP community attended the Sunday morning Workshop followed by a casual get-together over lunch. HSPRF Vice President and Workshop Convener, Con Xiros said he was pleased with the energy and enthusiasm shown by participants with lots of interaction, engagement and questions being asked. Con also expressed […]

Running for HSP

Posted - in HSPRF News

Adelaide fundraising

City 2 Surf run in Sydney

Posted - in HSPRF News

Charles wrote (pre-race): Stairs are now getting quite difficult. Getting off the bus is hard going and I have to pause and wait before commencing to walk after getting off. My legs are very stiff.I can still do limited slow jogging and so I’ll be running in the City 2 Surf this weekend. (sponsoring the […]

Changes to HSPRF Committee

Posted - in HSPRF News

Changing Roles Robin Bligh, co-founder and in inaugural president of the HSPRF announced in October that he was stepping down. We all owe a huge debt of gratitude to Robin as our achievements as a Foundation are a direct reflection of his leadership and foresight. The fact that the Foundation played a major role in […]

Stem Cell Pilot Study

Posted - September 2009 in HSPRF News

Medical Profession awareness of HSP

Posted - in HSPRF News

Volunteers helping   Col Harris (pictured), a member of the Foundation since inception, has never missed an opportunity to help raise awareness of HSP in the community or with the medical profession. On request, he has constantly presented himself as a guinea pig whenever and wherever asked at different hospitals and teaching facilities so that […]

Workshop & AGM 2009 + photos

Posted - in HSPRF 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 […]

UK Newslink & USA Synapse

Posted - in HSPRF News

 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.

Annual Report 2008 – 2009

Posted - in HSPRF News

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 […]

2009 Workshop & AGM in Melbourne

Posted - May 2009 in HSPRF News

 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 […]

Australians refused insurance

Posted - in HSPRF News

 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 […]

Rare Diseases in Australia

Posted - in HSPRF News

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 […]

Rare genetic conditions on the rise

Posted - in HSPRF News

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 […]

M. Hayden, Canada's 'researcher of year'

Posted - in HSPRF News

 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 […]

UK Newslink

Posted - in HSPRF News

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

Stem Cell Pilot Study underway

Posted - December 2008 in HSPRF News

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 […]