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 »

Spring Edition 2020

Summer edition to be published early December 2020

Mitochondrial function study in HSP

New findings about SPG7 and SPG4

Why genetic diagnosis rates still so low in HSP

Limitations of genetic testing technology

Large study of childhood-onset HSPs

Challenges in diagnosis experienced

Mechanism of SPG46 studied

Structure and function of mitochondria affected

Potential overlap between HSP and MS

New mutation in SPG7 implicated

Test for potential biomarker established

Relevance for HSP clinical trials

New HSP genotypes & phenotypes

Research from China, Japan, Russia, USA, Turkey, Italy, Germany and Taiwan

Taking care of mental health

Talking about it is a good start

Seated exercises

Build arm and leg strength, core stability and fitness

Bowel issues in HSP

One HSPer’s experience

Vitamin D for strong immune system

Regular sunshine or supplements needed

Novel treatment of spasticity in HSP

Helping recently diagnosed marathon runner

A rare case of tremor in HSP

Treated with drug therapy

News from US and UK support groups

Annual conferences and newsletters

Research Program update September 2020

Clinical trial in advanced planning stage

13 comments

Covid’s impact on living with HSP

Trying times for many

Lily Rice now a world champion

Battled back after injury

NDIS update September 2020

Participant Service Charter introduced

Having babies & genetic testing in HSP

Decisions, decisions? Take the survey!

Young Carer Bursary Program

Supporting carers’ education

People with SPG30 HSP wanted

Invitation to participate in research

Your Say »

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

Dictus Bands

Has anyone else here tried Dictus Bands?

5 comments

Speech difficulties with HSP

Has anyone been to a speech pathologist?

8 comments

Medical cannabis

Anyone tried it for HSP?

30 comments

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

Biomarker studies and advanced planning for clinical trials are the current focus of the HSP Research Program. The aim is to find out if the drug treatment effective with HSP stem cells in the lab is effective with HSPers themselves.

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. We need to reach $120,000 again in 2020 and we need your support now more than ever.

An effective treatment for HSP is now within reach!