Huge study of SPG4 in Italy
Important data and findings generated
Welcome to the HSP Research Foundation – created in 2005 to find an effective treatment for the Hereditary Spastic Paraplegias (HSPs) – a group of progressive, inherited, degenerative diseases 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 effective treatments and cures. The Foundation is also the community hub for people with HSP in Australia, creating awareness and providing information, education and support. Read more »
Winter Edition 2022
Spring edition to be published early September 2022
Important data and findings generated
Potential biomarker for treatment response
Toxic effect rather than shortage in some cases
Mouse exhibits a range of HSP characteristics
Links between lysosomes, lipids & nerve function
Reduced levels of a key enzyme affect neurite growth
Potential therapeutic pathway identified
Understanding of AMPAR receptor advanced
47 new HSP variants identified
Research from China, Spain, USA, Canada, Czech Republic, Russia, Norway, South Korea, Slovenia
Exploring home & living solutions, having independence
What you need to know
Take a Survey to help research
Victorian HSP family the motivation
Data on wellbeing, relationships, acceptance
8 years from symptoms to genetic diagnosis
How they are related and why
Full clinical picture & revisiting test results important
Finding a pathway forward
3 commentsAn ‘open garden’ & a wedding
Research underway to find a cure
5 gold medals at Australian Para Swim Titles
What’s the current status?
2 commentsFor children with rare & undiagnosed conditions
And a model with HSP for Victoria’s Secret
Many hoping for a better future
See what’s happening in other groups