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. Read More »

Autumn Edition 2021

Winter edition to be published early June 2021

Vital role of lipids in upper motor neurons

Implications for HSP and its treatment

Lipid disruption key in SPG3A cells

Impaired cholesterol metabolism restored

Mild cognitive impairment in some SPG11

Study of sporadic, late-onset cases

Spinal cord damage in HSP

Marked differences between HSP types

Significant brain changes in pure HSP

Potential biomarker of disease progression

HSPs linked to lysosome defects

Some commonalities with Alzheimer’s

New HSP-associated gene FAR1

AD form with different disease mechanism

New HSP genotypes and phenotypes

Research from China, Australia, Greece, the UK, Republic of Moldova, France, Cyprus, Italy, the USA, Japan, Sweden, Algeria, Portugal, Turkey, Belgium and India

COVID-19, Vaccination & HSP

What are the issues?

Chair-based exercise

Get fit while you sit

Learning & stimulation

Free online courses

Progress with SPG50

Investigative drug approved

Travelling with HSP

Planning & flexibility the secret

Dry needling treatment for spasticity

Improves spasticity & range of motion

Genetics at the heart of advances in HSP

Continuous technological innovation the key

Research program update March 20214 comments

Get the latest!

Rare Disease Day 28 February

Together we are strong

HSP community survey2 comments

What you told us

Major funding for HSP research

Drexel University team recipients

NDIS update March 2021

Independent Assessments the focus

US support group

Latest newsletter

Your Say »

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

Dictus Bands5 comments

Has anyone else here tried Dictus Bands?

Speech difficulties with HSP8 comments

Has anyone been to a speech pathologist?

Telling children about HSP7 comments

If, when and how?

Medical cannabis33 comments

Anyone tried it for HSP?

Here are 3 of the more than 700 community members

Foundation Research Team

Here are the researchers working on the HSP Research Program facilitated and funded by the Foundation

Fundraising for HSP Research

Securing the supply of drug treatments needed for the Phase 1 clinical trial is the current focus of the HSP Research Program. The aim of the clinical trials is to find an effective treatment for HSP.

There are technical, medical, ethical, regulatory, logistical, legal, financial and organisational challenges to address and take action on. The Foundation is fully committed to pushing ahead despite restrictions and limitations imposed by the global coronavirus pandemic.

Consistent funding support helps attract outside funding. The effort to get close to the target in 2020 is admirable in the circumstances – Thanks to those who gave! We need to reach $120,000 again in 2021 and need everyone’s support more than ever.

An effective treatment for HSP is now within reach!