Towards a Cure – new project

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… Continue reading Towards a Cure – new project

Fund Raiser in Q’ld

“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… Continue reading Fund Raiser in Q’ld

US Foundation awards grants

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… Continue reading US Foundation awards grants

HSP DVDs for sale

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… Continue reading HSP DVDs for sale

SPF ‘07 Conference in the USA

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… Continue reading SPF ‘07 Conference in the USA

German HSPers meet in Braunlage

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 as… Continue reading German HSPers meet in Braunlage

Workshop Sessions DVD

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:… Continue reading Workshop Sessions DVD