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 2020

Winter edition to be published early June 2020

Earlier HSP onset in successive generations

Missense mutations also related to earlier onset

Potential treatment for SPG5 HSP identified

Promising results in mouse studies

New SPG4 disease pathway identified

Mechanism unrelated to microtubule-severing ability

SPG31 studied in fruit flies

Flavonoid treatment restores impaired function

Review of 147 HSP studies of 13,570 HSPers

Revealing big picture overview

New HSP genotypes and phenotypes

Research from Russia, China, Japan, Poland, Italy, Canada, Czech Republic, Spain, the UK and Iran

Search for biomarker of complicated HSP

Retinal nerve fibre thickness studied

Care needed for anaesthesia in HSP

Successful formula reported in a recent study

Alinker walking bike

Making a huge mobility difference


Inspirational Welsh teenager Lily Rice

Wins first world title in wheelchair motocross

Global golf movement for people with disability

HSPer working to increase accessability

Facing adversity due to disability

Patience, ambition and pragmatism

Learning more about your genetic type

New data sharing tool VariantMatcher

Rare Disease Day

29 February 2020

NDIS update March 2020

3 reports about the scheme

HSP Community News

Fundraising & a social in Brisbane

Synapse (USA) and HSP Newslink (UK)

News from other HSP groups

Your Say »

This space is for you to have your say. Email us

Dictus Bands

Has anyone else here tried Dictus Bands?


Speech difficulties with HSP

Has anyone been to a speech pathologist?


Medical cannabis

Anyone tried it for HSP?


Here are 3 of the more than 700 community members

Australian of the Year 2017

Alan Mackay-Sim

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 the current 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.

There are technical, medical, ethical, regulatory, logistical, legal, financial and organisational challenges to address and implement. 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 2020.

An effective treatment for HSP is now within reach!