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 »
Autumn Edition 2019
Winter edition to be published early June 2019
New findings made
Need to look elsewhere for full picture of HSP genetics1 comment
Prompts new view of how they function
Additional mechanism suggested
Associated with joint deformities in the feet and hands
Matches with leg muscles affected
Measured by lack of sweating response
Size of difference related to clinical disability
Research from China, Japan, Denmark, Czech Republic, Italy, Canada, Saudi Arabia, the UK and Portugal
Non-mainstream therapies getting attention
Think Outside the Chair campaign
Review of HSP Management and Treatment research
New findings from large study
Complex interaction explored
Progress in preclinical studies and clinical trial preparation
20 year anniversary, exhibition opening and an award
Calls from advocates bearing fruit
Concerns in NSW
HSPer voices dissent over Council decision
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!