Medical Profession awareness of HSP

Posted - September 2009 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 »

SP Foundation’s 2008 Research Awards

Posted - in HSPRF News

Paola Arlotta, Ph.D.“Directed Differentiation of Neural Progenitors and iPS Cells into Corticospinal Motor Neurons” $60,000 for 1 year Janine Kirby PhD“Elucidation of upper motor neuron vulnerability in Primary Lateral Sclerosis” $55,908 for 1st year, $47,467 for 2nd year; total $103,375 Yasushi Kisanuki, M.D.“Paraplegia in HSP Rat: Analysis and treatment” $60,000 for 2 years; total $120,000… Read More »

UK HSP Newsletter

Posted - September 2008 in HSPRF News

Here is the latest newsletter of the HSP Support Group in the UK – HSP Newslink – published in September ’08 (pdf file).

Fundraising Innovation – an Everyday Hero

Posted - September 2008 in HSPRF News

Magnificent, inspiring and innovative effort Natalie Caruana, mother of Caeleigh who has HSP, ran in the City to Surf race to raise funds for the Foundation.  She and her team Caeleigh Crusaders Against HSP raised over $21,000, the highest total of all fundraisers in the City to Surf Charity Challenge.  What a magnificent, inspiring and… Read More »

HSP story in Sunday Tele

Posted - in HSPRF News

First ever print media publicity For the first time ever in Australia there has been a story (1.4MB pdf file) in a major paper on HSP.  Eligible bachelor, engineer and Foundation Fundraising Co-ordinator, Tim Xiros was featured in the article in the August 10th edition of Sydney’s Sunday Telegraph. Exceptional Response That led to a… Read More »

Annual Report 2007 – 2008

Posted - in HSPRF News

Highlights from President’s report

HSPRF President addresses Neurologists

Posted - in HSPRF News

Raises awareness of HSP and the Foundation A meeting of Neurologists and Neurogeneticists from across Sydney was held earlier in September to update the group on ataxias, spastic paraplegias and molecular diagnosis of spastic paraplegias. HSPRF President, Robin Bligh, was invited to speak to the gathering about the Foundation and its achievements. High level of… Read More »

Fund Raising for Stem Cell Research

Posted - May 2008 in HSPRF News

Currently our fundraising focus is on stem cell research stem cell research is the most promising path to a cure for HSP yet We need $100,000 for a pilot study, the first phase of this research.Members and supporters will get a letter about this in early May from our Fundraising Coordinator, Tim Xiros, whose profile… Read More »