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.
Preliminary study delivers promising results
Patient participation and empowerment
More complex picture has become evident
Lipid droplet dysfunction may cause HSP
Never previously linked with any disease
Diagnostic tool pointing to SPG10 HSP
New mutations and range of SPG 7 HSP expands
Medtronic ordered to stop selling it
Invitation to participate
Diagnostic test could help
Neuromuscular blockers a consideration
Treatable disease commonly misdiagnosed as HSP
Stress reduction highly beneficial
Progress report from the research team
First-ever international meeting, 1-2 June, 2015
Initiatives to address employment participation
Country butcher in NSW first
Medication and lifestyle data
Hope for faster, cheaper drug treatments
Collaboration with Sydney researchers
This space is for you to have your say. Email us
Spring 2015 edition to be published early September
If, when and how?
Anyone tried it for HSP?
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. Currently, 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!