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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SPAST (SPG4) HSP mechanism explained1

Potential drug treatment identified

Potential therapeutic avenues for HSP

Biomarkers investigated in animal models

Exome sequencing helps with HSP diagnosis

New gene-disease associations found

The science of patient input

Integrating patient needs and priorities

New Findings on SPG11 HSP mechanism

Potential treatment target identified

Late-onset spastic paraplegia type 10 (SPG10)

First-time discovered in an Asian family

REEP1 (SPG31) found with recessive inheritance

Previously associated only with dominant form

New HSP genetic findings

From Japan, Poland, England, China, Hungary, Morocco, Canada, Italy and the USA

‘Gaming’ the challenge of HSP1

Happier, healthier, stronger

A new era in genetic testing for HSP

What it means for HSPers

2016 survey of HSPers

Home modifications, quality-of-life

HSP gait study in children

Important findings about spasticity and weakness

Genetic Alliance wants your thoughts

Survey on gene testing

Research Update June 20162

Progress report from the research team

International logo for HSP6

Shared identity for HSPers everywhere

NDIS update

The Budget, State rollouts and more

Signing up for clinical trials3

HSPers keen to participate

HSPers making dreams come true

Two ‘good news’ stories

US and UK HSP groups Newsletters

News, views and information from and America and England

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

Winter 2016 edition of the website published 1 June

Spring 2016 edition to be published in early September.

Speech difficulties with HSP1

Has anyone been to a speech pathologist?

Telling children about HSP4

If, when and how?

Medical cannabis8

Anyone tried it for HSP?

Here are 3 of the more than 300 community members with HSP

Fundraising for HSP Research

The current phase of research - Validating Therapeutic Drug Candidates for treating HSP - is nearing completion. Two promising candidate drugs are being investigated in the laboratory to determine if they are sufficiently effective with both human and mouse HSP brain cells (neurons) to consider undertaking clinical trials and testing their effectiveness with HSPers. The latest news and updates on the research program can be found in the quarterly progress report in the HSPRF News section on this webpage. Just click on the ‘Research Update’ title.

Success with either drug candidate in these investigations will make a solid case for taking the drug candidate into clinical trials to test the potential to be an effective treatment for HSP. Plans are underway to make application for, and seek approval for clinical trials later in 2016.

The need for ongoing funding for the drug validation investigations will soon end, and the attention turns to funding the preparations, establishment and conduct of early-stage pre-clinical and clinical trials. The costs associated with clinical trials can be huge and there is no way we can hope to meet them all from fundraising, but it is essential that we play our part and do our best. We are much more likely to attract matching funding from outside sources when there is a clear demonstration of ongoing commitment to the goal by the HSP community in the form of consistent giving to support this work that is so important to us all.

Thanks to all who have given for your generous support. We achieved our 2015 fundraising target and now need to reach $85,000 for 2016. An effective treatment for HSP is now within reach!

2016

2015

$120,000
$108,000
$96,000
$84,000
$72,000
$60,000
$48,000
$36,000
$24,000
$12,000
$0
$80,000
$72,000
$64,000
$56,000
$48,000
$40,000
$32,000
$24,000
$16,000
$8,000
$0