HSP Research Foundation

06/09/2026

The Foundation has received a link to a review on SPG4 and acknowledges the efforts of the researchers involved for such a thorough, detailed, deep-dive examination of the challenges, uncertainties, conundrums and questions that are central to making progress towards clinical trials and developing disease-modifying therapies for SPG4.

"It’s a pleasure to share with you our recently published commentary/review on SPG4 HSP. The focus is on etiology and therapy.

Please feel free to share with others in our community.

Peter W. Baas, PhD
Professor, Department of Neurobiology and Anatomy
Drexel University College of Medicine
2900 Queen Lane

There is no cure for the rare disease Hereditary Spastic Paraplegia (HSP), but researchers from Drexel University’s College of Medicine and the UMass Chan Medical School have achieved proof-of-principle success with “silence and replace” gene therapy — an approach that uses a viral vector to...

05/09/2026

On our theme of ‘Living with HSP’, we recently spoke with Community member Nev, who highlighted the need to ensure we look after ourselves. HSP will limit movement and Nev stated.

“Our affliction affects us differently and we may not all be alike in our personal situations. However, we are generally unable to bend and manoeuvre like others. Over the years, I didn’t notice that my sore feet weren’t due to the HSP gait/walking issues but in fact due to foot fungus, I was never able to clean my feet properly. Since realising this, I have acted to treat my feet with natural tree oils and antiseptics and have seen massive improvements.

I have persisted and while I still have a bit to go, all the pain in my feet has stopped; it has taken a fair bit of time. For instance, I had to do some dry skin removal recently and the result was a noticeable improvement. If you discover issues like this yourself, go see your doctor to address the required treatment.

I am 58 and had neglected my feet most of my life due to the limitations resulting from the disability - unable to get to them for correct cleaning/hygiene.”

Nev’s final message was – “The risk is we may focus on the symptoms of our condition and not always see other things that are right in front of our face. Check things out and you may be surprised with the difference it makes. I certainly was.”

05/09/2026

I don't think there was a dry eye for anyone who has watched this; I certainly didn't have one. A very sad story - the undertaking to complete this would have been incredible and the result fantastic. Clearly, this was not any easy task for Jai Arrow. Our thoughts are with him and his family as they go forward facing the issues of living with MND.

There was great support for the former AFL player and coach, Neale Daniher who devoted his final years to raising funds for medical research and advocated for other people suffering with MND.

Hopefully, there is a greater awareness of neurological conditions and increased support for research in that field as a result of the efforts of all involved.

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.

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.

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.

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...

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

09/08/2026

Loved to share the message in this post.