HSPRF News

SPF announces 2010 grants

Posted - November 2010 in HSPRF News

Impressive Research Program

City 2 Surf challenge

Posted - August 2010 in HSPRF News

Support your fellow HSPers

New and better website

Posted - in HSPRF News

Loads of new features

Aust. HSP community growing

Posted - in HSPRF News

Strength in numbers

Ricki – service dog to surfing dog

Posted - in HSPRF News

A heartwarming story

UK Newslink & USA Synapse

Posted - in HSPRF News

Newsletters of the UK & USA HSP groups

Fundraising for everyone

Posted - March 2010 in HSPRF News

YOU can be a fundraiser!

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 »

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… 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 »