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.

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Large study of SPG4 HSPers

Four major findings

Lower motor neurons impaired in some HSPs

Classification based on motor neuron involvement

Hereditary Ataxias and Spastic Paraplegias

Genes and symptoms overlap

HSP classification and terminology

Genetics explosion prompts update

New HSP genotypes and phenotypes

From Canada, USA, Pakistan, France, Japan, Czech Republic and Belgium

Botox plus serial casting more effective1

Children with scissor gait can benefit

Life insurance and genetic testing

Discrimination happening in Australia

Adaptive sports for HSPers1

Three young HSPers making a difference

HSP gait due to simultaneous muscle contractions

Linked to walking ability and energy expenditure

HSP research program update September 20175

Drug dose modelling study initiated

The 2017 ‘Potato Pants’ Festival

Raising awareness of HSP in the UK

Trekking in Nepal

HSP community member’s adventure

SP Foundation Annual Conference 2017

Presentations on HSP and PLS

NDIS update September 20171

Planning process under fire

Swimming for HSP research

Donation campaign at Lake Constance, Germany

Social Get Togethers in NSW and Qld1

Helping build community

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

Spring 2017 edition of the website published 2 September1

The Summer 2017 edition of the website will be published in early December.

Speech difficulties with HSP5

Has anyone been to a speech pathologist?

Telling children about HSP5

If, when and how?

Medical cannabis15

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

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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 have commenced as has a drug dose modelling study. Consistent funding support helps attract outside fundingWe need to reach $120,000 again in 2017. An effective treatment for HSP is now within reach!

 

2017

2016

$120,000
$108,000
$96,000
$84,000
$72,000
$60,000
$48,000
$36,000
$24,000
$12,000
$0
$120,000
$108,000
$96,000
$84,000
$72,000
$60,000
$48,000
$36,000
$24,000
$12,000
$0