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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Pure HSP not so ‘pure’

Sensory and memory deficits associated

SPG8 HSP understanding increased

Genetic misdiagnosis possible

Rethink of KIF1A HSP mutation

Not just recessive complicated HSP

SPG4 and SPG3A HSP spectrum expands

New genetic mutations identified

HSP linked to Machado-Joseph disease

Inclusive gene testing assists accurate diagnosis

Intrathecal baclofen treats mild spasticity1

Improved gait performance

Pelvic floor spasticity a problem with HSP

Physiotherapy proves helpful

Staying Safe and Grounded

Prevent falls at home and around town

Robotic gait training2

Effective long-term for balance and walking

‘High-end’ Walkers

Are they worth the extra cost?

Exercise in HSP1

Leading HSP neurologist recommends

HSP Research update March 20153

Progress report from the research team

HSPer takes on marathon Rottnest swim

Raises $8,000 for HSP research

Young Victorian HSPer promising athlete

Sets long jump world record

Rare Disease Day, 28 February 2015

Highlights living with a rare disease

US newsletter Synapse

Social, lifestyle and health news and information

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

HSP and chemotherapy

Any feedback appreciated

Autumn edition published 28 February 2015

Winter 2015 edition published early June

Telling children about HSP3

If, when and how?

Kenneth Ware therapy1

Has anyone tried it?

Medical cannabis2

Anyone tried it for HSP?

Private disability insurance policy4

has anyone received a payout?

Disability Pension and HSP9

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. The current drug investigations are being carried out with nasal HSP stem cells. Two new validation studies have now commenced, 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 3 separate investigations will make a very strong case for taking the drug candidate into human clinical trials to test its potential to be an effective treatment for HSP. Plans are underway to make application for, and seek approval for human clinical trials in early 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!