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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Fampyra may improve HSP mobility6

Preliminary study delivers promising results

Medical research in the digital age

Patient participation and empowerment

HSP system of classification in question2

More complex picture has become evident

Spastin regulates lipid droplet metabolism

Lipid droplet dysfunction may cause HSP

New AD-HSP gene (CPT1C) discovered

Never previously linked with any disease

AD-HSP and peripheral neuropathy

Diagnostic tool pointing to SPG10 HSP

Paraplegin mutations impair mitochondrial function

New mutations and range of SPG 7 HSP expands

Baclofen pump ordered withdrawn – UPDATED!1

Medtronic ordered to stop selling it

Parental Support Needs Survey

Invitation to participate

Difficulty telling HSP and PLS apart

Diagnostic test could help

General anaesthetics and HSP

Neuromuscular blockers a consideration

Treatable disease commonly misdiagnosed as HSP

Treatable disease commonly misdiagnosed as HSP

Evidence for benefits of meditation and exercise

Stress reduction highly beneficial

HSP Research update June 20151

Progress report from the research team

HSP group leaders meet in Madrid

First-ever international meeting, 1-2 June, 2015

2015 Federal Budget and NDIS Scorecard

Initiatives to address employment participation

HSP donation boxes on shop counters

Country butcher in NSW first

Results of survey of HSPers3

Medication and lifestyle data

‘Mass production’ drug testing

Hope for faster, cheaper drug treatments

Early onset HSP in India

Collaboration with Sydney researchers

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

Winter edition of the website published 3 June 2015

Spring 2015 edition to be published early September

Telling children about HSP3

If, when and how?

Medical cannabis3

Anyone tried it for HSP?

Private disability insurance policy4

has anyone received a payout?

Disability Pension and HSP10

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!

2015

2014

$80,000
$72,000
$64,000
$56,000
$48,000
$40,000
$32,000
$24,000
$16,000
$8,000
$0
$88,627
$75,000
$67,500
$60,000
$52,500
$45,000
$37,500
$30,000
$22,500
$15,000
$7,500
$0