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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Severe pain and HSP

Different types found

New HSP mechanism discovered

Potassium ion channel dysfunction

The role of proteins in axon regeneration

Spastin and Atlastin mechanism investigated

HSP cell abnormalities

Lipid droplet metabolism important

SPG57 HSP new findings

Mitochondrial impairment the cause

SPG48 HSP studied in depth

Multiple associated complications

New HSP genetic findings

From Hungary, Sudan, Australia and China

Cognitive function in HSPers

Mild impairment is widespread

Second study finds MS drug helps HSP

Gains in walking speed and hand dexterity

New survey for HSPers

Focus on fatigue

Exercises and stretching

Two new videos available

HSP and urinary issues

Complications need management

Finding your HSP gene type

What are the chances?

Robin John Bligh 24.1.1935 – 27.9.2016 R.I.P.2

Founder and Inaugural President

Prof. Mackay-Sim honoured

Queensland’s Australian of the Year candidate

HSP Research Program update December 20166

Planning for Clinical Trials

Community members in the news

Dedication and inspiration

A dog and a horse

Animals helping HSPers

NDIS update December 2016

Trial phase shows NDIS is working

US and UK HSP groups Newsletters

and a ‘Rare Song’ from Norway

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

Summer 2016 edition of the website published 2 December

Autumn 2017 edition to be published in early March.

Speech difficulties with HSP2

Has anyone been to a speech pathologist?

Telling children about HSP4

If, when and how?

Medical cannabis10

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 $120,000 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