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 »

Winter Edition 2019

Spring edition to be published early September 2019

Large study of SPG7 HSP

Genotype-phenotype correlations described

SPG48 HSP studies in mice

Disease mechanism described

New brain imaging technology delivers

Brain Stem Atlas identifies SPG7 changes

SPG9 HSP linked with other conditions

Common mechanism discovered

Different approach to genetic detection

Success in 40% of cases

POLR3A gene related syndromes include HSP

Large Norwegian study confirms earlier research

New HSP genotypes and phenotypes

Research from Iran, USA, Italy, Germany, Spain, Bulgaria, Canada, Austria, Saudi Arabia, China, Ireland and Finland

Botox for hip adductor spasticity

Improves walking stability and speed

Assessing impaired social cognitive function

Good treatment linked to good assessment

High prevalence of urinary issues in HSP

Assessment and management helps avoid complications

Spasticity and its impacts

Stumbling, struggling and shame

Hands free wheelchair

Handles rough terrain

Results of survey of HSPers

Misdiagnosis, other health conditions, well-being and mobility

HSP clinical trial program update June 2019

Progress in preclinical studies and clinical trial preparation


HSP family takes on wheelchair marathon

Raises $11,500 for HSP research

Ways to raise money for HSP

4 community members’ stories

NDIS update June 2019

Royal Commission; applying & using the NDIS

Overseas HSP community numbers grow

106 members, 21 countries, 5 continents

HSPers in the news from Aust., US and the UK

Lawn bowls, community work and wheelchair sports

Social get-together in Brisbane

Same day as biomarker study participation

US Synapse and German TWS newsletters

Learn what is happening in other HSP groups around the world

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!