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.
Different types found
Potassium ion channel dysfunction
Spastin and Atlastin mechanism investigated
Lipid droplet metabolism important
Mitochondrial impairment the cause
Multiple associated complications
From Hungary, Sudan, Australia and China
Mild impairment is widespread
Gains in walking speed and hand dexterity
Focus on fatigue
Two new videos available
Complications need management
New knowledge gained
What are the chances?
Founder and Inaugural President
Queensland’s Australian of the Year candidate
Planning for Clinical Trials
Dedication and inspiration
Animals helping HSPers
Trial phase shows NDIS is working
and a ‘Rare Song’ from Norway
This space is for you to have your say. Email us
Autumn 2017 edition to be published in early March.
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 $120,000 for 2016. An effective treatment for HSP is now within reach!