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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Australian success with whole genome sequencing

Higher detection rates for HSP mutations

Recessive SPG35 HSP inherited from just one parent

Major implications for genetic counselling

Large Czech study of SPAST HSP

327 HSPers from 263 families gene tested

FARS2 gene mutation described

Causes recessive but pure SPG77 HSP

HSPer also found to have MS1

First description of dual occurrence

Pure HSP study of children in Greece

Clinical and genetic findings

New HSP genetic findings

From Iran, Germany, China, Greece, Japan, Pakistan and Hungary

HSP and urinary tract infections

Not to be taken lightly

Electrical stimulation therapy

Functional improvement possible for HSP

Health survey of HSPers in Norway

Compared with overall population

New drug available on the NHS in England

For children with Duchenne muscular dystrophy

‘Gaming’ the challenge of HSP1

Happier, healthier, stronger

A new era in genetic testing for HSP

What it means for HSPers

HSP Research Program Update September 20165

Progress report from the research team

SP Foundation Conference in Chicago

Videos of 6 great sessions

June fundraising success

Kokoda track adventure contributes

NDIS Update September 2016

Australia-wide implementation commenced 1 July

Airline travel with a disability2

Dealing with huge challenges

Young HSPers in the news

Two stories from the UK

Research Update June 20162

Progress report from the research team

Signing up for clinical trials3

HSPers keen to participate

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

Spring 2016 edition of the website published 1 September

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 $120,000 for 2016. An effective treatment for HSP is now within reach!