HSPRF News

Gene Testing Service now a reality!

Posted - May 2008 in HSPRF News

Thanks to your $84,000 in donations, a gene testing service is now available in Australia for all Australians at risk of HSP.  It is a wonderful achievement for such a young Foundation and something of which we can all be pleased and proud. Read more about the Gene Testing Service

Report on Berlin Research Symposium, April 2008

Posted - in HSPRF News

The Berlin Research Symposium was a one day event held on April 11, 2008 in Magdeburg, Germany and entitled ”Hereditary Neurodegeneration – Mechanisms, Genes and Phenotypes".  This was an event of the Tom Wahlig-Foundation: "To put researchers in touch with each other….. and to do everything possible to find a cure for the illness in… Read More »

Towards a Cure – new project

Posted - December 2007 in HSPRF News

Robin Bligh, HSPRF President – on a new project under consideration.  We have developed tests for 3 important genes and these will be available in November. It is now time to start switching research priority to finding an HSP cure (no, not utopia) finding a therapeutic drug with the help of stem cell research. Stem… Read More »

Fund Raiser in Q’ld

Posted - in HSPRF News

“We urge all members to do a similar event when a special birthday or other special occasions arise.  We were overwhelmed by people’s generosity and we are sure you will be too.” . . . Narelle & Ian Narelle from Queensland sent us this lovely story of a simple and successful fund-raising formula: "The formation… Read More »

US Foundation awards grants

Posted - in HSPRF News

The Spastic Paraplegia Foundation (SPF) of the USA recently announced that it awarded $333,561 in research grants to three outstanding scientists to help find the cures for Primary Lateral Sclerosis (PLS) and Hereditary Spastic Paraplegia (HSP).  The SPF’s Scientific Advisory Board rated their proposals as outstanding opportunities to advance research and help find the cures… Read More »

HSP DVDs for sale

Posted - in HSPRF News

German and French DVDs on different aspects of HSP have been made. A DVD from the German HSP group demonstrates physiotherapy programs based on the Bobath Method specific to 3 individuals at different stages of HSP symptom development: Non-ambulatory [wheelchair] Walking with a support frame Walking independently The DVD, with an English voiceover, is now… Read More »

2007 HSPRF Workshop

Posted - November 2007 in HSPRF News

Read five informative presentations from the Workshop

SPF ‘07 Conference in the USA

Posted - June 2007 in HSPRF News

The Spastic Paraplegia Foundation in the US hosted its 2007 National Conference in Nashville, TN, April 13 – 14 and celebrated five years of bringing support, progress and monies to find a cure for the PLS and HSP communities. Attendance at the conference was impressive with 118 in the audience. Three countries and 27 states… Read More »

German HSPers meet in Braunlage

Posted - in HSPRF News

More than 200 people attended the 2007 Annual Meeting of the German HSP self-help group in May, making it the world’s largest gathering of HSPers ever.   “Our meetings get bigger and more interesting! I am glad to be here” explained a woman who had traveled from Cologne.  Intensive conversations between guests were the norm… Read More »

Gene Testing Service within sight

Posted - March 2007 in HSPRF News

A 3 gene test for HSP covering half of all cases will be finalised by the ANZAC Research Institute by the end of April.  3 Gene Test In a slight change of direction to previous plans, a 3 gene test is now considered to be the best bet for making reliable, affordable genetic testing available… Read More »

Workshop Sessions DVD

Posted - March 2007 in HSPRF News

HSPRF Workshop Sessions 2006 – DVD now available! The Sessions from the HSP Research Foundation Workshop held in Sydney last September are now available on DVD.  Members and supporters will receive their own DVD of the 2006 Workshop Sessions in the mail soon if they haven’t already. The Sessions: HSP the Disease and Recent Developments:… Read More »

Garden Club donates $2,000

Posted - in HSPRF News

Garden Club donates $2,000 for HSP research Thanks to HSPRF members Col and Judy Harris taking the initiative, their local Garden Club recently made a $2,000 donation. Judy writes: We are members of a very fine garden club, which among other things, conducts an ever growing OPEN GARDEN weekend. The funds raised are distributed to… Read More »

Gene Testing Project

Posted - in HSPRF News

Gene Testing Project reports good progress At the 6-month point (10/’06) of the Gene Testing Project funded by the HSP Research Foundation, members of the Foundation met with researchers from the Anzac Research Institute (ARI) to discuss and report on progress with tests for 2 HSP genes – Spastin and Atlastin.  Robin Bligh, Dr. Tanya… Read More »

2005 – 2006 Annual Report

Posted - in HSPRF News

Annual Report presented at AGM

Bulletin No. 5 – February 2006

Posted - in HSPRF News

FUND RAISING SUCCESS CONGRATULATIONS to HSP Research Foundation members and their families & friends.  We had a December target of $50,000 to raise for the Gene Testing Project.  It was increased to $55,000 on a rework of costing and we exceeded the new target on time in early March 2006.  We have raised $58,800.  WELL… Read More »

Bulletin No. 4 – September 2005

Posted - in HSPRF News

FINDING AND DEFINING YOUR GENE MUTATION Testing Cost and Availability The HSP Research Foundation has heard from many members of the very high prices of HSP gene testing overseas (it can not be done in Australia yet).  The high cost to members has been limiting its adoption.  The HSP Research Foundation investigated the issue and… Read More »

Bulletin No. 3 – July 2005

Posted - in HSPRF News

WORKSHOP REPORT What a great morning!  led by Prof. Garth Nicholson, Prof. of Neurogenetics, at the Molecular Medicine facility at Concord Hospital, prior to our AGM. Garth proceeded to lead a discussion on genes, with diagram examples of recessive, dominant and X linked, and explained the complexity of  pinpointing the actual gene that applied to… Read More »

Bulletin No. 2 – June 2005

Posted - in HSPRF News

AGM – Notice of Meeting This is the second Bulletin of the HSPRF and is being sent to Members along with the Notice of Meeting papers for the AGM on June 26.  It is also being sent to people who attended meetings or made contact with us and who have not yet become members. The… Read More »

Bulletin No. 1 – April 2005

Posted - February 2007 in HSPRF News

INAUGURAL MEETING Our inaugural meeting was on Feb 20, 2005 and the Notes have been sent out from Concord.  This Bulletin is to let you know what has been happening since.  If you find it useful perhaps 3 or 4 a year would be appropriate. Membership All HSP sufferers at the meeting have joined plus… Read More »