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
Call for new classification
Gene not previously linked to disease
Good result from mice study
Mutational repeats key factor
Genetic test to support clinical assessment
Damage may be more widespread than thought
6 studies reviewed covering 5 HSP genes
Research from Italy, UK, Portugal, USA, Japan, Israel, the Netherlands, Turkey, Saudi Arabia, South Korea
The importance of acceptance
Criticism of new insurance industry proposal
Focus on symptoms, sleep, activities, misdiagnosis
And a solution for one Paralympic athlete
Failed to normalise muscle control and gait
Progress in clinical trial preparation and preclinical studies6 comments
But one HSPer fulfils a dream
Pushing boundaries in the UK and the US
Selected in U23 State team
Lunch in Midland Junction
Read what other groups are doing
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!