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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Value of stem cell models of HSP

Discovery of potential treatments

Review of status of HSP knowledge

Supports current direction towards clinical trials

Lysosome recycling problems in SPG11 HSP

More understanding of the pathway involved

HSP types and patterns similar globally

Large study in China confirms previous findings

New findings on SPG54 HSP

Mitochondria now implicated

New HSP genotypes and phenotypes

Research from China, Japan, Germany, Turkey and Australia

Survival tips for caregivers

Ask for help, take time for yourself

Daily duration stretching pays off

Improved mobility and range of motion

Lack of movement has negative impacts

Brain and nerves affected

Botox effects on kids and adults with HSP

The findings of two studies

Is muscle growth impaired in HSP kids?

Earliest age of onset are most affected

HSP clinical trial program update September 201831

Progress in clinical trial planning and preclinical studies

Applying for the NDIS1

What HSPers should know

US, UK and German HSP Groups

What other groups are doing

Two fitness enthusiast brothers with HSP

Their story of coping, adaptation and support

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

Spring 2018 edition of the website published 2 September

Summer 2018 edition to be published early December

Speech difficulties with HSP7

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