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.
Potential drug treatment identified
Biomarkers investigated in animal models
New gene-disease associations found
Integrating patient needs and priorities
Potential treatment target identified
First-time discovered in an Asian family
Previously associated only with dominant form
From Japan, Poland, England, China, Hungary, Morocco, Canada, Italy and the USA
Happier, healthier, stronger
What it means for HSPers
Home modifications, quality-of-life
Important findings about spasticity and weakness
Survey on gene testing
Progress report from the research team
Shared identity for HSPers everywhere
The Budget, State rollouts and more
HSPers keen to participate
Two ‘good news’ stories
News, views and information from and America and England
This space is for you to have your say. Email us
Spring 2016 edition to be published in early September.
Has anyone been to a speech pathologist?
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!