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 dysfunction in SPG31 HSP

Function restored in cell samples

Two siblings with blood disorder and HSP

Both conditions autosomal recessive inheritance

Large national HSP database in Canada

Valuable resource for much-needed research

SPG42 HSP mechanism now well understood

Study of mice confirms earlier findings

Complicated form of HSP linked to new gene

Impaired lipid metabolism mechanism

SPG78 HSP mechanism investigated

Pathway leads to sell organelle impairment

New HSP genetic findings

From China, the Middle East, Italy and France

Adapted sports for adult wheelchair users

Positive influence on quality of life

Impact of temperature on mobility

Keep the legs and feet warm

Pain and Spasticity

Management without pills

Affordability problem with orphan drugs

A potential problem for HSPers

Is a baclofen pump right for you?

Assessment and testing

Bladder emptying and residual urine1

Testing and management

Parkinsonism and rare type of SPG11 HSP

Treatment with deep brain stimulation successful

Social gathering in Brisbane

HSPers meet over dinner

HSP Research Program update March 20173

Planning for Clinical Trials

HSPers in Singapore

Mutual support group

NDIS update March 2017

Worrying times for people with disability

Kids with SPG47 HSP

And parents taking on the challenge

US and UK HSP groups’ Newsletters

Read what’s happening in other groups

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

Autumn 2017 edition of the website published 26 Febuary

Winter 2017 edition of the website will be published in early June.

Speech difficulties with HSP3

Has anyone been to a speech pathologist?

Telling children about HSP5

If, when and how?

Medical cannabis11

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

Studies over 2015/16 aimed at validating drug candidates were completed successfully at the end of 2016 thus making a solid case for testing in clinical trials. The focus of the HSP Research Program is now on clinical trials, aimed at determining the extent to which a drug treatment found to be effective with human HSP stem cells in the laboratory is effective with HSPers themselves. Planning of this huge undertaking has begun and includes technical, medical, ethical, regulatory, logistical, financial and organisational aspects. Read more…

The costs associated with clinical trials can be huge and we can hope to meet only a fraction of them from fundraising, but it is essential that we play our part and do our best. We are much more likely to attract matching funding from outside sources when there is a clear demonstration of ongoing commitment to the goal by the HSP community in the form of consistent giving to support this work that is so important to us all.

Together we exceeded the 2016 fundraising target of $120,000 by almost $20,000 with a grand total for the year of $139,196. Heartfelt thanks to all who gave in 2016 for your generous support. We now 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