HSP Research Foundation

Welcome to the HSP Research Foundation - created in 2005 to find a cure for Hereditary Spastic Paraplegia - an inherited, degenerative disease affecting mainly the legs, causing muscle weakness, spasticity and severely impairing walking.

The HSP Research Foundation is an incorporated, registered Australian charity that facilitates and funds research to find a cure. The Foundation is also the community hub for HSPers in Australia, creating awareness and providing support and education.

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Promising HSP drugs identified29

Potential for future clinical trials

Mild cases of SPG4 HSP studied

A high percentage were asymptomatic

Treatment for rare form of complicated HSP

Betaine successful in lowering cysteine

SPG33 HSP mutation affects protrudin

Protrudin important in cell structure and function

New Spastin mutation discovered

Found to affect a neighbouring gene

MS drug may also help HSP

Significantly aids walking

Preventing Falls

Here are the facts

Intrathecal Baclofen

Catheter placement crucial for effectiveness

Serial casting for HSP1

May help with pain and spasticity

Assessing global distribution of HSP

Prevalence rates and genetic diagnosis statistics

Paraquad services

Charity provides services in NSW

Volunteering for clinical trials5

Lot of interest being expressed

National Disability Insurance Scheme1

The scheme is secure… for now!

UK HSPer’s blog and survey

Mobilty, symptoms and mis-diagnosis

Melbourne HSPer doing it tough

Herald Sun article

Advantages of wheelchair or scooter

A different view of things

Newsletter of SP Foundation (USA)

Synapse Newsletter & Annual Report

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

Winter edition published 6 June 2014

Spring 2014 edition in early September

Botox warning

Adverse reaction to larger dose

Disability Pension and HSP4

Request for information and advice

Swollen feet and legs5

related to HSP?

MS drug for HSP?2

HSPer trys Fampradine (Fampyra)

HSP and neuropathy4

Ideas for treating the pain?

Fundraising for HSP Research

The current phase of research begun in 2013 in the Towards a Cure for HSP research program is titled Testing & Selecting Therapeutic Drug Candidates for treating HSP.

Two promising candidate drugs are being investigated to determine their suitability for undertaking clinical trials. The current drug investigations are being carried out with nasal HSP stem cells. Two new investigations are in the advanced planning stage, one with HSP mice and the other with human HSP neurons derived from a different type of stem cell.

Success with a drug candidate in these separate investigations will make a very strong case for taking the drug candidate into human clinical trials to test its potential to cure HSP.

Our fundraising performance in calendar 2013 was only modest. We encourage everyone in the HSP community to be determined to find a way to fund the current and planned research in 2014, as nobody wants the research work to slow down in the quest to find suitable candidates for taking to clinical trials and the possibility of a cure for HSP. Please give generously to ensure continuity of research towards a cure for HSP.