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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Severe pain and HSP

Different types found

New HSP mechanism discovered

Potassium ion channel dysfunction

The role of proteins in axon regeneration

Spastin and Atlastin mechanism investigated

HSP cell abnormalities

Lipid droplet metabolism important

SPG57 HSP new findings

Mitochondrial impairment the cause

SPG48 HSP studied in depth

Multiple associated complications

New HSP genetic findings

From Hungary, Sudan, Australia and China

Cognitive function in HSPers

Mild impairment is widespread

Second study finds MS drug helps HSP

Gains in walking speed and hand dexterity

New survey for HSPers

Focus on fatigue

Exercises and stretching

Two new videos available

HSP and urinary issues

Complications need management

Finding your HSP gene type

What are the chances?

Robin John Bligh 24.1.1935 – 27.9.2016 R.I.P.2

Founder and Inaugural President

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Prof. Mackay-Sim honoured2

Queensland’s Australian of the Year candidate

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HSP Research Program update December 20168

Planning for Clinical Trials

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Community members in the news

Dedication and inspiration

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A dog and a horse

Animals helping HSPers

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NDIS update December 2016

Trial phase shows NDIS is working

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US and UK HSP groups Newsletters

and a ‘Rare Song’ from Norway

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

Summer 2016 edition of the website published 2 December

Autumn 2017 edition to be published in early March.

Speech difficulties with HSP2

Has anyone been to a speech pathologist?

Telling children about HSP5

If, when and how?

Medical cannabis10

Anyone tried it for HSP?

Here are 3 of the more than 300 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