HSPRF News
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… Read More »
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… Read More »
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… Read More »
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… Read More »
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… Read More »
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… Read More »
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… Read More »
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… Read More »
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… Read More »
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… Read More »
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… Read More »
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… Read More »
More publicity for HSP
Posted - in HSPRF News
The 26 September 2008 launch of the Stem Cell Pilot Study The 26 September 2008 launch of the Stem Cell Pilot Study attracted media attention with Channel 10 Brisbane running an item in their main evening TV news on the same day. Brisbane’s main daily newspaper, The Courier-Mail, sent a journalist to interview Ian and… Read More »
2008 HSPRF Workshop Report
Posted - in HSPRF News
Over 40 people attended the 2008 HSPRF Workshop at Concord Hospital in Sydney. The Annual Workshop was held at Concord Hospital in conjunction with the AGM in October, 2008. Managing Spasticity – recent experiences: Steve Lunn & Col Harris, members of the HSPRF Community Steve described various treatments he had tried over the years, all… Read More »
