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 2019
Autumn edition to be published early March 2020
Potential as a biomarker of progression
Associated with recessive, complicated HSP
Huge HSP genetics study in Canada
Parkinsonism and a potential eye movement biomarker
Increased, not decreased, activity found
“Neighbour” genes involved in complex, early-onset forms
Same gene & mechanism causes another disorder
Research from The Netherlands, Sweden, Russia, USA, Italy, Brazil, UK, Japan, France, Switzerland, Germany, Tunisia, Iran, China, Turkey
Potential response to treatment
Dramatic improvement in symptoms with surgery
Significant long-term improvements in spasticity
Focus on medication, exercise
Intensive neurological physiotherapy helps
Choice about gene tests
5 get-togethers in 4 States
Paralympics dream and a world champion
Government announces plan to improve the NDIS
Leading researchers presenting
News from other HSP groups
Australian of the Year 2017
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!