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 »

Spring Edition 2019

Summer edition to be published early December 2019

Advances in understanding of the HSPs

Insight into impaired functions and underlying mechanisms

Three rapid tests of HSP features developed

Potential drug target for SPG4 identified

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New explanation for SPG4 causal mechanism

Both too little & too much Spastin to blame

Mitochondrial dynamics and HSP axon defects

Corrected by having less of key protein DRP1

SPG35 HSP overlaps FAHN & leukodystrophy

Phenotype, disease course, clinical & imaging biomarkers

New, dominant form of HSP, SPG80, described

Found in 10 geographically diverse families worldwide

Atlastin’s role in SPG3A explored

Mechanism and dynamics of impairment described

New HSP genotypes and phenotypes

Research from the UK, China, Pakistan, Italy, Spain, France, Turkey, Austria, Canada, USA & Germany

More challenge needed in daily life

Using skills and social interaction are key to well-being

Wheelchair Gardening … is that a thing?

The power of the positive & being outdoors

Cognitive profiles of HSPers studied

Significant impairments found to be frequent

Simple, home-based exercise successful

Fitness, flexibility & strength maintained

HSP clinical trial program update September 2019

Progress in preclinical studies and clinical trial preparation

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SPF Annual Conference, June 2019, presentations

And research funding allocations SPF (USA)

HSP community socials in NSW & WA

Fundraising in SA & Facebook birthdays

SPF Synapse (USA) and ASL (France)

News from other HSP groups

Gene testing for all seriously ill children

No national strategy on rare diseases

NDIS update September 2019

Parliamentary committee wants your comments

Your Say »

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

Dictus Bands

Has anyone else here tried Dictus Bands?

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Speech difficulties with HSP

Has anyone been to a speech pathologist?

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Medical cannabis

Anyone tried it for HSP?

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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!