HSP Research Foundation

HSP Research Foundation Laboratory

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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Developing a ‘natural history’ of HSP

Large German study lays the foundation

Atlastin (SPG 3A) investigated

Questions raised about regulation and role

SPG 8 HSP loss-of-function theory questioned

Implications for alternative gain-of-function hypothesis

Brain shrinkage found in SPG 2 HSP

Changes also in the myelin sheath around axons

Mechanism of complicated SPG49 HSP studied

TECPR2 protein deficiency affects multiple cell functions

New HSP genetics findings

From Germany, Norway, Pakistan, China, Japan

Fatigue, pain, depression and HSP1

Research study establishes the link

Alleviating spasticity important for mobility4

Exercises from a physio who has HSP

TEK mobility device

An HSPer shares his story of using it

New exoskeleton device to aid walking

Lighter and cheaper than earlier models

Intrathecal baclofen for HSP

New study confirms potential benefits

Rare disease drugs and cost

The attempt to make them cheaper

Priority Assistive Products2

Tell the World Health Organisation what you want

Research Update March 20163

Progress report from the research team

German HSP association wins “Google Impact Challenge”

Thank you message to all who voted in support

NDIS update

Significant progress over the last quarter

UK Newsletter Feb 2016

Events, people, support and fundraising

New US program helps develop treatments

Early testing of drugs for rare diseases

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

Autumn edition of the website published 28 February 20161

The Winter 2016 edition of the website will be published in early June.

Telling children about HSP4

If, when and how?

Medical cannabis7

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!

2016

2015

$85,000
$76,500
$68,000
$59,500
$51,000
$42,500
$34,000
$25,500
$17,000
$8,500
$0
$80,000
$72,000
$64,000
$56,000
$48,000
$40,000
$32,000
$24,000
$16,000
$8,000
$0