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

Huge French study of SPG4 HSP

New findings made

30-40% genetic diagnosis gap in HSPs

Need to look elsewhere for full picture of HSP genetics

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Neurons more complex than thought

Prompts new view of how they function

Conventional view of SPG4 cause challenged

Additional mechanism suggested

New genetic type of HSP discovered

Associated with joint deformities in the feet and hands

Spinal cord changes in pure HSP

Matches with leg muscles affected

Damage in SPG4 extends to nerves of the feet

Measured by lack of sweating response

Spatial relationships different in SPG4 HSP brain

Size of difference related to clinical disability

New HSP genotypes and phenotypes

Research from China, Japan, Denmark, Czech Republic, Italy, Canada, Saudi Arabia, the UK and Portugal

Approaches to treating spasticity

Non-mainstream therapies getting attention

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HSPer changing public perception of disability

Think Outside the Chair campaign

Little evidence for HSP therapies

Review of HSP Management and Treatment research

Urinary complaints in HSP

New findings from large study

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Wheelchair use, pain and quality of life

Complex interaction explored

HSP clinical trial program update March 2019

Progress in preclinical studies and clinical trial preparation


The Tom Wahlig Foundation celebrates

20 year anniversary, exhibition opening and an award

Disability abuse Royal commission

Calls from advocates bearing fruit

NDIS Update March 2019

Concerns in NSW

Disabled access to hydrotherapy pool reduced

HSPer voices dissent over Council decision

Your Say »

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

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!