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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Overview of the HSPs

Call for new classification

Complex new disease includes HSP

Gene not previously linked to disease

Potential treatment for SPG2 type HSP

Good result from mice study

NIPA1 (SPG6) gene also associated with MND

Mutational repeats key factor

AAA syndrome presenting as complicated HSP

Genetic test to support clinical assessment

SPG11 unresponsive to l-dopa treatment

Damage may be more widespread than thought

HSP mechanism research accelerates

6 studies reviewed covering 5 HSP genes 

New HSP genotypes and phenotypes

Research from Italy, UK, Portugal, USA, Japan, Israel, the Netherlands, Turkey, Saudi Arabia, South Korea

Personal growth and HSP

The importance of acceptance

Life insurance and gene testing

Criticism of new insurance industry proposal

2018 Survey of HSPers now available

Focus on symptoms, sleep, activities, misdiagnosis

Issues with the Baclofen Pump

And a solution for one Paralympic athlete

High rate of urinary symptoms in older HSPers1

Impaired bladder function the main cause

Alternative spinal pathway tested in HSP

Failed to normalise muscle control and gait

Victorian HSPer takes up rowing1

Encourages others to try it

HSP clinical trial program update December 20186

Progress in clinical trial preparation and preclinical studies

Three HSPers making news

Pushing boundaries in the UK and the US

SA teen with HSP shines in basketball

Selected in U23 State team

Social get-together in WA

Lunch in Midland Junction

US Synapse and UK Newslink newsletters

Read what other groups are doing

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

Summer edition of the website published 2 December

Autumn edition to be published early March.

Speech difficulties with HSP8

Has anyone been to a speech pathologist?

Telling children about HSP7

If, when and how?

Medical cannabis20

Anyone tried it for HSP?

Here are 3 of the more than 400 community members with HSP

Australian of the Year 2017

Alan Mackay-Sim

Head of the HSP Research Program, Prof Alan Mackay-Sim was named Australian of the Year for 2017 by the Prime Minister in an awards ceremony at Parliament House in Canberra in late January

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Fundraising for HSP Research

Pre-clinical investigations leading into clinical trials are now the focus of the HSP Research Program. The aim is to find out if the drug treatment effective with HSP stem cells is effective with HSPers themselves. There are technical, medical, ethical, regulatory, logistical, legal, financial and organisational aspects to consider. Biomarker studies to find a measure for HSP are underway as is a drug dose modelling study. Consistent funding support helps attract outside fundingWe need to reach $120,000 again in 2018. An effective treatment for HSP is now within reach!

 

2018

2017

$120,000
$108,000
$96,000
$84,000
$72,000
$60,000
$48,000
$36,000
$24,000
$12,000
$0
$120,000
$108,000
$96,000
$84,000
$72,000
$60,000
$48,000
$36,000
$24,000
$12,000
$0