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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Biomarker discovery for SPG5 HSP

Two cholesterol derivatives identified

DDHD1 and DDHD2 HSP genes investigated

Lipid metabolism dysfunction the common cause

Adaptor Protein (AP) genes linked with 5 types of HSP

Mechanisms & processes described in 3 research studies

Rare form of SPG4 HSP misdiagnosed

Early-onset symptoms “misleading”

New HSP mutation found in FA2H gene

Early-onset and rapid progression SPG35 HSP

“You’ve got HSP …”2

“There is nothing that can be done”

Mobile phone app for wheelchair users

Help with travel planning and getting around

Bike Skills Program for HSP kids1

Monash Children’s Hospital, Victoria

Being cold makes walking with HSP difficult

But does warming the legs help?

Improving balance … what works better?2

Real-world tasks or Virtual Reality games?

Bone density lower in HSPers

Testing and treatment recommended

HSP clinical trial program update March 20186

Progress in preclinical studies

HSP community giving in 20175

Yikes, what just happened!

Support for young HSPers

from Singapore, Ireland and Dubai

An Actor and an Athlete

2 HSPers hitting the big time

US Synapse and UK Newslink newsletters

Read what other groups are doing

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

Autumn 2018 edition of the website published 27 February

The Winter 2018 edition of the website will be published in early June

Speech difficulties with HSP5

Has anyone been to a speech pathologist?

Telling children about HSP5

If, when and how?

Medical cannabis17

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!

 

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