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.
Progress report from the research team
Three research studies reviewed
Helping understand more about SPG2 HSP
New gene for HSP implicated
From Japan, Greece, Belgium, Turkey, Italy, Canada
From a physio who has HSP
But just how to do that with HSP?
From an expert in the field
Operated hands-free by body movement
And testing is getting cheaper
Fatigue related to severity
Some States are well behind
Eating in Italy raising money for research
One community member’s experience
$1 million in grants available
Questions on home modifications and other topics
And latest Synapse Newsletter
This space is for you to have your say. Email us
Autumn 2016 edition to be published early March
If, when and how?
Anyone tried it for HSP?
Fundraising for HSP Research
The current phase of research - Validating Therapeutic Drug Candidates for treating HSP - is projected to be completed in mid-2016. Three promising candidate drugs are being investigated to determine their suitability for undertaking clinical trials. Two validation studies are underway, one with HSP mice and the other with human HSP neurons derived from a different type of stem cell – induced pluripotent stem cells.
Success with any drug candidate in these separate investigations will make a solid case for taking the drug candidate into clinical trials to test its potential to be an effective treatment for HSP. Plans are underway to make application for, and seek approval for clinical trials in 2016.
With the funding for these drug validation studies now secure, the attention turns to funding the development of a database / registry of HSPers and the establishment costs in making clinical drug trials a reality. These costs are huge and there is no way we can meet them all, but it is essential that we play our part and do our best.
Thanks to your generous support, we well exceeded our 2014 fundraising target. An effective treatment for HSP is now within reach!