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 Australian team
Large HSP study in China
Demarcation from 2 other diseases
Lysosomes and waste removal in cells impaired
Valuable resource for clinical trials
Sensory axons lack mitochondria and degenerate
Lack of family history not definitive
ALS2 gene mutations in common
Purpose and portability are key
How to maximise independence and freedom
What to do if you fall
Walking speed and balance improved
Research study reports good results
Key player in spinal cord repair breakthrough
‘Potato Pants’ – unique HSP fundraising idea
The way forward for HSP research
Questions about medication and lifestyle
Advantages in becoming a member
3 different perspectives
Helping HSPers get connected
Opportunity to participate welcomed
This space is for you to have your say. Email us
Has anyone tried it?
Anyone tried it for HSP?
Autumn edition to be published in early March
has anyone received a payout?
Request for information and advice
Fundraising for HSP Research
The current phase of research - Testing & Selecting Therapeutic Drug Candidates for treating HSP - began in early 2013. Two promising candidate drugs are being investigated to determine their suitability for undertaking clinical trials. The current drug investigations are being carried out with nasal HSP stem cells. Two new validation studies have now commenced, 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 3 separate investigations will make a very strong case for taking the drug candidate into human clinical trials to test its potential to be an effective treatment for HSP. Plans are underway to make application for, and seek approval for human clinical trials in early 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. We are on track to achieve our $75,000 fundraising target for calendar year 2014 thanks to your generous support. An effective treatment for HSP is no longer out of reach!