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 »
Winter Edition 2019
Spring edition to be published early September 2019
Genotype-phenotype correlations described
Disease mechanism described
Brain Stem Atlas identifies SPG7 changes
Common mechanism discovered
Success in 40% of cases
Large Norwegian study confirms earlier research
Research from Iran, USA, Italy, Germany, Spain, Bulgaria, Canada, Austria, Saudi Arabia, China, Ireland and Finland
Improves walking stability and speed
Good treatment linked to good assessment
Assessment and management helps avoid complications
Stumbling, struggling and shame
Handles rough terrain
Misdiagnosis, other health conditions, well-being and mobility
Progress in preclinical studies and clinical trial preparation5 comments
Raises $11,500 for HSP research
4 community members’ stories
Royal Commission; applying & using the NDIS
106 members, 21 countries, 5 continents
Lawn bowls, community work and wheelchair sports
Same day as biomarker study participation
Learn what is happening in other HSP groups around the world
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!