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.
Specific areas identified
Sensory and memory deficits associated
Genetic misdiagnosis possible
Not just recessive complicated HSP
New genetic mutations identified
Inclusive gene testing assists accurate diagnosis
Improved gait performance
Physiotherapy proves helpful
Prevent falls at home and around town
Effective long-term for balance and walking
Are they worth the extra cost?
Leading HSP neurologist recommends
Progress report from the research team
Raises $8,000 for HSP research
Sets long jump world record
Highlights living with a rare disease
Social, lifestyle and health news and information
This space is for you to have your say. Email us
Winter 2015 edition published early June
If, when and how?
Has anyone tried it?
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. 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.
Thanks to your generous support, we well exceeded our 2014 fundraising target. An effective treatment for HSP is now within reach!