HSP Research Foundation

HSP Research Foundation We are the support group of the Australian HSP (hereditary spastic paraplegia) community. The HSP Re

The HSP Research Foundation was created in 2005 to find a cure for Hereditary Spastic Paraplegia - an inherited, degenerative disease affecting mainly the legs, causing muscle weakness and spasticity and severely impairing walking. The HSP Research Foundation is an incorporated, registered Australian charity, which facilitates and funds research to find a cure. The Foundation is also the community

hub for HSPers in Australia, creating awareness and providing support and education. The Foundation’s sole purpose is to serve the HSP community and act in their best interests. The primary focus is on Australians with HSP, but just like HSP itself, which knows no ethnic or geographic boundaries, in some ways we serve the global HSP community of over 500,000. Each month, the website receives about 800 different visitors from 68 countries (75% from Australia) who view around 5,000 pages.

16/08/2026

At the Foundation, we are excited to let you know a study of HSP gait by the Engineering Department at Griffith University in Brisbane, which was initiated by the late Professor Alan Mackay-Sim, has now been published in a scientific journal. The study was conducted in 2019 and 2020 with a total of 11 Community members participating in walking experiments on four different occasions. In addition, a further 8 people, without HSP, participated in a control group capacity to compare HSP and non-HSP gait using a new approach to analysing the data gathered by wearable sensors. The next step is for further investigation to gather more evidence and assess the practical value of this potential biomarker.

The published paper discusses how there are no biomarkers as yet for HSP suitable for use in clinical trials. Such a biomarker needs to be able to definitively measure disease status, disease progression and response to treatment over the course of the trial. The study at Griffith University successfully correlated the novel approach to gait analysis with other measures of HSP such as the Spastic Paraplegia Rating Scale, and successfully distinguished the HSP group from the matching non-HSP control group in the study. The technology used is a wearable sensor, which will allow widespread use and broader application compared with laboratory based gait analysis approaches.

We felt it important to let you know that members of our community participated in this study with the potential to become an important biomarker, which is at the top of the list for moving HSP research into clinical trials so that the effectiveness of therapies and treatments can be confidently and accurately assessed.

To our members in and around Sydney, you might want to note your diary for the Disabilty Expo scheduled for 23 and 24 Oc...
13/08/2026

To our members in and around Sydney, you might want to note your diary for the Disabilty Expo scheduled for 23 and 24 October.

One of the major struggles for many of us is finding the right services when we need them. That’s why we deliver the largest Disability and NDIS-related expos in Australia, to help connect participants and service providers and make this whole process easier.

To our members in Perth. You may wish to note your diary for the Disability Expo scheduled for 27 and 28 November.
13/08/2026

To our members in Perth. You may wish to note your diary for the Disability Expo scheduled for 27 and 28 November.

One of the major struggles for many of us is finding the right services when we need them. That’s why we deliver the largest Disability and NDIS-related expos in Australia, to help connect participants and service providers and make this whole process easier.

For members in the Gippsland Vic region, you are invited to a catch up organised by the Hereditary Spastic Paraplegia an...
11/08/2026

For members in the Gippsland Vic region, you are invited to a catch up organised by the Hereditary Spastic Paraplegia and PLS Support Group.

Friday 11 September 2026 - 12 Noon
Venue - Newmason
31 Williams Street, Warragul

https://www.newmason.net/

RSVP to this post by Friday 4 September with the names of guests attending.

If you have already notified the organisers of your attendance/non attendance, there is no need to respond to this post

Kind Regards

Ken Price
President

Welcome to Newmason Restaurant, Warragul’s favourite spot to eat, drink, and relax.Whether you’re here for a casual meal, a special celebration, or just a drink with friends, we offer a warm and inviting atmosphere. Our menu features fresh, locally sourced ingredients crafted into delicious mode...

Port Macquarie HSP/PLS GatheringTo members living in and around Port Macquarie, you are invited to a catch up organised ...
11/08/2026

Port Macquarie HSP/PLS Gathering

To members living in and around Port Macquarie, you are invited to a catch up organised by the Hereditary Spastic Paraplegia and PLS Support Group.

Saturday 19 September 2026 - 12 Noon
Venue - Port City Bowling Club
4 Owen Street, Port Macquarie

https://portcity.com.au/

RSVP by Friday 11 September with the names of guests attending
If you have already notified the organiser of your attendance/non attendance, there is no need to respond to this post.

I am planning to attend this event and look forward to catching up with local community members.

Ken Price
President

 

Loved to share the message in this post.
09/08/2026

Loved to share the message in this post.

09/08/2026

Well done Arlo. Always look forward to see what you are achieving. 👍

Well done Henry. Good to see what is happening on a global basis.
20/07/2026

Well done Henry. Good to see what is happening on a global basis.

After our recent post on Dr Ozlinder, thought we would provide the link to the work that is being done.
14/07/2026

After our recent post on Dr Ozlinder, thought we would provide the link to the work that is being done.

Our goal is to understand the cellular and molecular basis of selective neuronal vulnerability. The lab primarily focuses on the corticospinal motor neurons (CSMN), the neurons that are important for the initiation and modulation of voluntary movement.

An article on exercising well worth a read.
14/05/2026

An article on exercising well worth a read.

Learn when it’s safe to exercise after a neurological diagnosis, how to start slowly, and why physical therapy, trainers, and community support can help.

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23 Aubrey Street, Stanmore
Sydney, NSW
2048

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