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.

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HSP research update December 20155

Progress report from the research team

Focus on SPG11 HSP

Three research studies reviewed

Protein interactions and nerve myelination

Helping understand more about SPG2 HSP

More overlap between HSP and CMT discovered

New gene for HSP implicated

New HSP genetics findings

From Japan, Greece, Belgium, Turkey, Italy, Canada

Exercise ball exercises for HSP

From a physio who has HSP

Travel, exotic places, holidays!

But just how to do that with HSP?

Orthoses for HSP

From an expert in the field

Revolutionary new wheelchair

Operated hands-free by body movement

Better genetic testing improves diagnosis

And testing is getting cheaper

NDIS rollout plans for NSW & Victoria

Some States are well behind

Adelaide café gets behind HSP

Eating in Italy raising money for research

The NDIS and HSP

One community member’s experience

GOOGLE Impact Challenge

$1 million in grants available

Survey for HSPers1

Questions on home modifications and other topics

SP Foundation (USA) Annual Conference

And latest Synapse Newsletter

This space is for you to have your say. Email us

Summer edition of the website published 3 December 20151

Autumn 2016 edition to be published early March

Telling children about HSP3

If, when and how?

Medical cannabis5

Anyone tried it for HSP?

Here are 3 of the more than 300 community members with 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!