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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Mitochondrial impairment studied in SPG15 & 48 HSP

Function restored with treatment in lab experiments

SPG10 HSP gene now linked with Motor Neurone Disease

Previously linked to Charcot Marie Tooth

New HSP gene ACO2 discovered

Associated with recessive complicated HSP

Mechanism of AP-4 related HSPs investigated

AP-4 deficiency underlies four types of HSP

SPAST mutation affects adjacent gene

Combined effect causes complicated HSP

EPT1 mutation causes complicated HSP

Affects myelin sheath that covers nerves

Parkinsonism found in SPG7 HSP

Responsive to levodopa treatment

Ataxia-spasticity spectrum disorders

Limitations in classification and diagnosis

New HSP genotypes and phenotypes

Research from France, Canada, Turkey, Germany, Norway, Spain, Italy, South Korea, India and the USA

Living with a rare disease

New thinking, new ideas

Comparing intrathecal vs oral baclofen1

Evaluating intrathecal delivery system

‘Living with the Enemy’

Coping with the stress of a chronic condition

New genotype – phenotype correlations found in paediatric HSP

Warning on imitations of current methodologies

Voice problem found in case of SPG7 HSP

Effective treatment available

Genetics company promotes rare disease registries

Connecting with research, clinical trials management

HSP clinical trial program update June 20183

Progress in preclinical studies

Gallery for artists with rare disease

Online art contest now open!

NDIS update June 2018

Widespread concerns are mounting up

Disability in the Arts

Kate Hood gives keynote address at international conference

Izzy Wheels

Stylish covers for wheelchair wheels

Tips for getting the most out of the website

‘Search’ function the key

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

Winter 2018 edition of the website published 1 June

Spring 2018 edition to be published early September

Speech difficulties with HSP6

Has anyone been to a speech pathologist?

Telling children about HSP6

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