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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Questioning disease classification systems

A mechanistically inspired classification proposed

Particular form of Spastin is toxic

Interferes with fast axonal transport

Axonal degeneration in HSP

Link between different classes of HSP proteins

SPG11 mutations observed in HSP, ALS and CMT2

Common mechanism of lipid accumulation in lysosomes

Impairment of Atlastin protein causes SPG3A type HSP

Important role in the regeneration of neurons disrupted

So-called Junk DNA not really junk

Junk DNA mutations found to cause HSP

More than 60 mutations exist for SPG3A HSP

Can’t predict symptom profile in this HSP type

New HSP genetic findings

From Mali, Norway, Germany, Qatar, Italy, Turkey, Saudi Arabia, Pakistan, USA, Poland

Balance can be improved in HSP1

Falls can be prevented

“Becoming Disabled”

How we think about disability

Unusual muscle tears in HSPer

HSP might lead to changes in muscle tissue

Dealing with chronic pain

Shared reading a novel treatment

Taking on a challenge

HSPer achieves prestigious award

HSP Research Program update June 20176

Focus on pre-clinical investigations

Happy with your neurologist or physio?

Recommend them to the HSP community

Just who is Alan Mackay-Sim?

A personal profile

Equity and access, Carers, Fundraising

Supporting HSPers in different ways

Raising awareness of HSP

‘Potato Pants’ is a great way to do it

NDIS update June 2017

Commitment to fully fund the scheme

Social get-togethers in Vic and NSW1

HSPers making it happen

US and UK HSP groups’ Newsletters

Read what’s happening in other groups

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

Winter 2017 edition of the website published 3 June

The Spring 2017 edition of the website will be published in early September

Speech difficulties with HSP5

Has anyone been to a speech pathologist?

Telling children about HSP5

If, when and how?

Medical cannabis12

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!