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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HSP research update December 20144

Progress report from the Australian team

New test helps with HSP diagnosis

Demarcation from 2 other diseases

SPG11 and SPG15 HSP mechanism explained

Lysosomes and waste removal in cells impaired

Large HSP database in Japan

Valuable resource for clinical trials

Kinesin protein functions not well understood

Sensory axons lack mitochondria and degenerate

A new twist on SPG4 HSP

Lack of family history not definitive

Link between HSP, PLS and ALS

ALS2 gene mutations in common

The latest in scooters

Purpose and portability are key

Situational use of mobility devices1

How to maximise independence and freedom

I’ve fallen. Now how do I get up?

What to do if you fall

Robot-assisted gait training2

Walking speed and balance improved

Botox effective for HSP

Research study reports good results

Alan Mackay-Sim receives worldwide recognition1

Key player in spinal cord repair breakthrough

International HSP news

‘Potato Pants’ – unique HSP fundraising idea

Global collaboration between HSP support groups2

The way forward for HSP research

Survey for HSPers

Questions about medication and lifestyle

Join the HSP community

Advantages in becoming a member

Current status of the NDIS

3 different perspectives

Set up a local HSP social group

Helping HSPers get connected

Annual General Meeting held online

Opportunity to participate welcomed

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

Kenneth Ware therapy

Has anyone tried it?

Medical cannabis1

Anyone tried it for HSP?

Summer edition published 4 December, 2014

Autumn edition to be published in early March

Private disability insurance policy4

has anyone received a payout?

Disability Pension and HSP7

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. We are on track to achieve our $75,000 fundraising target for calendar year 2014 thanks to your generous support. An effective treatment for HSP is no longer out of reach!