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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Promising treatment found for SPG5 HSP

Atorvastatin reduces toxic fatty compounds in the brain

Next Generation gene testing telling a story

Much of HSP genetics still not understood

HSP differences in identical twins

More than genetic inheritance at play

Brain activity levels potential diagnostic for SPG4 HSP

Differences with disease severity identified

SPG2 HSP mechanism described

Loss of specialised support cells the cause

New HSP gene discovered

SERAC1 deficiency causing complex HSP

New HSP genotypes and phenotypes

From China, Japan, Italy, Brazil, UK, Korea, USA, Israel, Iran, Moldova, Greece, France, Belgium, Germany, UAE, Russia

SPG7 HSP more common in Australia

Genetic testing providing insight

Are you planned for an emergency?

Be your own ‘first responder’

2017 Survey of HSPers now available

Focus on jobs, walking, well-being and pain

Improving balance to prevent falls

Focus on front to back sway

Large gait study of HSP, CA and PD

Confirms HSP gait as highly variable

HSP research program update December 20172

Preclinical studies address the big questions

First wheelchair backflip by young HSPer

Inspires a catchy Christmas song

Aerobatics wing walker and 10km fun run

2 HSPers raising money for charity

NDIS update December 2017

Can they get it right?

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

Summer 2017 edition of the website published 2 December1

The Autumn 2018 edition of the website will be published in early March.

Speech difficulties with HSP5

Has anyone been to a speech pathologist?

Telling children about HSP5

If, when and how?

Medical cannabis15

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 have commenced as has a drug dose modelling study. Consistent funding support helps attract outside fundingWe need to reach $120,000 again in 2017. An effective treatment for HSP is now within reach!

 

2017

2016

$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