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. Read More »
Summer Edition 2018/2019
Autumn edition to be published early March 2019
Overview of the HSPs
Call for new classification
Complex new disease includes HSP
Gene not previously linked to disease
Potential treatment for SPG2 type HSP
Good result from mice study
NIPA1 (SPG6) gene also associated with MND
Mutational repeats key factor
AAA syndrome presenting as complicated HSP
Genetic test to support clinical assessment
SPG11 unresponsive to l-dopa treatment
Damage may be more widespread than thought
HSP mechanism research accelerates
6 studies reviewed covering 5 HSP genes
New HSP genotypes and phenotypes
Research from Italy, UK, Portugal, USA, Japan, Israel, the Netherlands, Turkey, Saudi Arabia, South Korea
HSP clinical trial program update December 2018
Progress in clinical trial preparation and preclinical studies
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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. Read More »
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 are underway as is a drug dose modelling study. Consistent funding support helps attract outside funding. We need to reach $120,000 again in 2019.
An effective treatment for HSP is now within reach!
