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.
Large study of SPG4 HSPers
Four major findings
Lower motor neurons impaired in some HSPs
Classification based on motor neuron involvement
Hereditary Ataxias and Spastic Paraplegias
Genes and symptoms overlap
HSP classification and terminology
Genetics explosion prompts update
New HSP genotypes and phenotypes
From Canada, USA, Pakistan, France, Japan, Czech Republic and Belgium
Botox plus serial casting more effective
Children with scissor gait can benefit
Life insurance and genetic testing
Discrimination happening in Australia
Adaptive sports for HSPers1
Three young HSPers making a difference
HSP gait due to simultaneous muscle contractions
Linked to walking ability and energy expenditure
Wheelchair and Scooter technology advances
Features – at a price!
HSP research program update September 20174
Drug dose modelling study initiated
The 2017 ‘Potato Pants’ Festival
Raising awareness of HSP in the UK
Trekking in Nepal
HSP community member’s adventure
SP Foundation Annual Conference 2017
Presentations on HSP and PLS
NDIS update September 20171
Planning process under fire
Swimming for HSP research
Donation campaign at Lake Constance, Germany
Social Get Togethers in NSW and Qld1
Helping build community
This space is for you to have your say. Email us
Spring 2017 edition of the website published 2 September
The Summer 2017 edition of the website will be published in early December.
Speech difficulties with HSP5
Has anyone been to a speech pathologist?
Telling children about HSP5
If, when and how?
Medical cannabis13
Anyone tried it for 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
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 have commenced as has a drug dose modelling study. Consistent funding support helps attract outside funding. We need to reach $120,000 again in 2017. An effective treatment for HSP is now within reach!