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.
Large German study lays the foundation
Questions raised about regulation and role
Implications for alternative gain-of-function hypothesis
Changes also in the myelin sheath around axons
TECPR2 protein deficiency affects multiple cell functions
From Germany, Norway, Pakistan, China, Japan
Research study establishes the link
Exercises from a physio who has HSP
An HSPer shares his story of using it
Lighter and cheaper than earlier models
New study confirms potential benefits
The attempt to make them cheaper
Tell the World Health Organisation what you want
Progress report from the research team
Thank you message to all who voted in support
Significant progress over the last quarter
Events, people, support and fundraising
Early testing of drugs for rare diseases
This space is for you to have your say. Email us
The Winter 2016 edition of the website will be published in early June.
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!