HSP Research Foundation
Welcome to the HSP Research Foundation – created in 2005 to find an effective treatment for Hereditary Spastic Paraplegia (HSP) – an inherited, degenerative disease affecting mainly the legs, causing spasticity, muscle weakness and severely impairing walking.
The HSP Research Foundation is an incorporated, registered Australian charity that facilitates and funds research to find an effective treatment. The Foundation is also the community hub for HSPers in Australia, creating awareness and providing information, education and support. Read More »
Spring Edition 2019
Summer edition to be published early December 2019
Insight into impaired functions and underlying mechanisms
Both too little & too much Spastin to blame
Corrected by having less of key protein DRP1
Phenotype, disease course, clinical & imaging biomarkers
Found in 10 geographically diverse families worldwide
Mechanism and dynamics of impairment described
Research from the UK, China, Pakistan, Italy, Spain, France, Turkey, Austria, Canada, USA & Germany
Using skills and social interaction are key to well-being
The power of the positive & being outdoors
Significant impairments found to be frequent
Fitness, flexibility & strength maintained
Progress in preclinical studies and clinical trial preparation1 comment
And research funding allocations SPF (USA)
Fundraising in SA & Facebook birthdays
News from other HSP groups
No national strategy on rare diseases
Parliamentary committee wants your comments
Australian of the Year 2017
Head of the HSP Research Program, Prof Alan Mackay-Sim was named Australian of the Year for 2017 by the Prime Minister in an awards ceremony at Parliament House in Canberra in late January. Read More »
Fundraising for HSP Research
Pre-clinical investigations leading into clinical trials are now the focus of the HSP Research Program. The aim is to find out if the drug treatment effective with HSP stem cells is effective with HSPers themselves.
There are technical, medical, ethical, regulatory, logistical, legal, financial and organisational aspects to consider. Biomarker studies to find a measure for HSP are underway as is a drug dose modelling study. Consistent funding support helps attract outside funding. We need to reach $120,000 again in 2019.
An effective treatment for HSP is now within reach!