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 nearing completion. Two promising candidate drugs are being investigated in the laboratory to determine if they are sufficiently effective with both human and mouse HSP brain cells (neurons) to consider undertaking clinical trials and testing their effectiveness with HSPers. The latest news and updates on the research program can be found in the quarterly progress report in the HSPRF News section on this webpage. Just click on the ‘Research Update’ title.
Success with either drug candidate in these investigations will make a solid case for taking the drug candidate into clinical trials to test the potential to be an effective treatment for HSP. Plans are underway to make application for, and seek approval for clinical trials later in 2016.
The need for ongoing funding for the drug validation investigations will soon end, and the attention turns to funding the preparations, establishment and conduct of early-stage pre-clinical and clinical trials. The costs associated with clinical trials can be huge and there is no way we can hope to meet them all from fundraising, but it is essential that we play our part and do our best. We are much more likely to attract matching funding from outside sources when there is a clear demonstration of ongoing commitment to the goal by the HSP community in the form of consistent giving to support this work that is so important to us all.
Thanks to all who have given for your generous support. We achieved our 2015 fundraising target and now need to reach $85,000 for 2016. An effective treatment for HSP is now within reach!