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 »

Summer Edition 2019

Autumn edition to be published early March 2020

Special imaging shows differences due to HSP

Potential as a biomarker of progression

New HSP gene PCYT2

Associated with recessive, complicated HSP

Suspected new HSP gene SPTAN1

Huge HSP genetics study in Canada

Two studies of SPG7

Parkinsonism and a potential eye movement biomarker

SPG30 mechanism clarified

Increased, not decreased, activity found

SPG2 has a hugely variable presentation

“Neighbour” genes involved in complex, early-onset forms

SPG13 mechanism described

Same gene & mechanism causes another disorder

New HSP genotypes and phenotypes

Research from The Netherlands, Sweden, Russia, USA, Italy, Brazil, UK, Japan, France, Switzerland, Germany, Tunisia, Iran, China, Turkey

Non-motor symptoms in SPG4 HSP

Potential response to treatment

Mixed urinary incontinence in women

Dramatic improvement in symptoms with surgery

Intrathecal baclofen study very positive

Significant long-term improvements in spasticity

New mobility device invented

Designed to replace both walker and wheelchair


2019 HSP Survey

Focus on medication, exercise

HSPer regaining lost mobility

Intensive neurological physiotherapy helps

Empowering children in HSP families

Choice about gene tests

HSP research program update December 2019

Progress in preclinical studies


Social events in the HSP community

5 get-togethers in 4 States

HSPers aiming high in sports

Paralympics dream and a world champion

NDIS update December 2019

Government announces plan to improve the NDIS

International Meeting on HSP and Ataxia

Leading researchers presenting

Synapse (USA) and HSP Group 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 400 community members with HSP

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 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!