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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Promising results in HSP drug candidate class3

Nerve axon regeneration and improved motor function

What is now known about SPG4 HSP

More answers, but also more questions

Brain changes in SPG4 HSP measured

Correlated with disease duration and severity

76 HSP types from 59 genes … and counting2

Gene testing advances show complex picture

Different patterns of HSP in Korea

Other genes may be involved

How REEP1 mutations cause HSP clarified

Involved with both mitochondria and ER

SPG9 HSP: dominant and recessive inheritance

Both pure and complicated forms of HSP

New HSP mutations discovered

Research from US, China, Middle East and Greece

Genetic testing’s rapid advancement2

What is available for HSP in Australia

Medical marijuana studies reviewed

May help with chronic pain and spasticity

Exercise for HSP2

From a physio who has HSP

Beach Wheelchairs

Available right around Australia

GeneStoryTeller – a mobile app

Information retrieval of human genes

HSP research update September 20153

Progress report from the research team

Foundation fundraising progress1

Toyota and Ritchies IGA add to the total

Hardship for two women with HSP

Both victims of rejection

Launch of Rare Diseases International

A global voice for people with rare diseases

NDIS Update

Mixed news over the last quarter

US Newsletter Synapse

Spring 2015 edition

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

Foot pronation and pain

Is this associated with HSP?

Telling children about HSP3

If, when and how?

Medical cannabis4

Anyone tried it for HSP?

Private disability insurance policy4

has anyone received a payout?

Disability Pension and HSP11

Request for information and advice

Fundraising for HSP Research

The current phase of research - Testing & Selecting Therapeutic Drug Candidates for treating HSP - began in early 2013. Two promising candidate drugs are being investigated to determine their suitability for undertaking clinical trials. Currently, two validation studies are underway, one with HSP mice and the other with human HSP neurons derived from a different type of stem cell – induced pluripotent stem cells.

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

With the funding for these drug validation studies now secure, the attention turns to funding the development of a database / registry of HSPers and the establishment costs in making clinical drug trials a reality. These costs are huge and there is no way we can meet them all, but it is essential that we play our part and do our best.

Thanks to your generous support, we well exceeded our 2014 fundraising target. An effective treatment for HSP is now within reach!