HSP Research Foundation

08/10/2026

The following is from an article featuring in British Columbia News. The Foundation provided a letter of support for an application for a grant to support research for the SPG4 project. Link to the full article is below.

"Advancing treatment for children with rare genetic diseases

Summary

The Province is partnering with leading research universities to develop personalized gene-editing therapy for Gurmoh Gill, a B.C. child living with hereditary spastic paraplegia type 4, a rare neurodegenerative disease
At the same time, Gurmoh’s experience will be used to shape how other children with rare diseases and their families navigate from diagnosis to potential treatment
While supporting Gurmoh, the diagnosis-to-treatment pathway has the potential to support patients across a broad range of rare genetic conditions
It contributes to B.C.’s status as a leader in advancing research and innovation in rare genetic therapy and strengthens B.C.’s competitiveness as a destination for health research and investment"

04/10/2026

Well done to all which is fantastic in spreading the HSP message.

I am clearly jealous of Tallulah's ability to paint. Wow, well done!

New horizons, painted in kindness 🌅

Our family and Our Moon's Mission: Genetic Cures for Kids loved being part of the Coolum Art Collective's Spring Art Exhibition, Horizons this year!

It was gorgeous to meet all the artists and see them sharing praise on opening night, and to have the weekend to marvel at the calibre of this year's display.

A special moment for Tallulah was seeing her own artwork on display alongside the other artists- she nearly jumped out of her chair!

Being part of the exhibition gives her a real sense of belonging, and that means the world to us. 💛 We couldn't do it without our favourite art teacher, Chony Bowden who supports Tallulah with her creations. We highly recommend Chony's Art Room classes to all families with little people- it's the best after-school outlet for expression.

On Sunday, we drew winning tickets and got to call each winner of the Charity Auction held in aid of Our Moon's Mission 👐🏼 congrats to all.

We're thrilled to share that, through this campaign, the Collective raised $1,305 to help us on our mission to cure SPG56. This was made possible by the love of the artists, supporters and exhibition visitors who took part.

Huge thanks to the whole crew for the support, and to everyone who stopped to chat, ask questions and take an interest in Tallulah's story and our mission.

We feel incredibly lucky to be connected with this art community of deep thinkers, generous hearts and creatives. Thank you for supporting us throughout our journey.

From little things, big things grow. 🌙 Let's see what's on the horizon! 😉

29/09/2026

Congratulations to Liam Luff.

Sutherland Shire wheelchair rugby league player and Cronulla Sharks coach Liam Luff has been selected to represent Australia at the 2026 Rugby League World Cup.

Luff has secured one of just 10 places in the Australian Wheelaroos squad for the tournament, which will be played on home soil later this year.

The final Australian team was announced after Luff was named in an extended 12-player World Cup squad in June.

It will be Luff's second World Cup in the green and gold after representing Australia at the 2022 tournament in England, where the Wheelaroos reached the semi-finals.

Luff has strong connections to wheelchair rugby league in the Sutherland Shire.

A self-described "Shire boy" and lifelong Sharks supporter, he coaches the Cronulla-Sutherland Sharks wheelchair rugby league team while also competing at the sport's highest level.

His contribution to the game was recognised in 2024 when he was named the NSW Rugby League Inclusive Volunteer of the Year for his work developing the next generation of wheelchair rugby league players.

Speaking at the time about his ambition to make the 2026 World Cup, Luff said playing for Australia on home soil was his next major goal.

"Ideally in my world I'd like to wear that green-and-gold jersey and have my Sharks players there watching to show them what they can do down the line," he said.

Two years later, that goal has now been achieved.

Luff joins captain Bayley McKenna, Daniel Anstey, Peter Arbuckle, Cory Cannane, Diab Karim, Toby Popple, Stephan Rochecouste, Zac Schumacher and Adam Tannock in Australia's final 10-player squad.

The Wheelchair Rugby League World Cup will form part of the wider 2026 Rugby League World Cup, with the men's, women's and wheelchair tournaments being staged concurrently in Australia and Papua New Guinea.

For Luff, the tournament will also provide the opportunity to represent Australia much closer to home, with Wheelaroos matches to be played in Wollongong.

Australia will begin its World Cup campaign against New Zealand on October 31.

23/09/2026

On Saturday, 17 October 2026, the second World HSP Day will unite people around the world to raise awareness of Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS)—two rare neurological disorders that have a profound impact on the daily lives of patients and their families.

All HSP organizations around the world have been asked to take action and help make this day a powerful global movement.

We encourage all our members/followers to join, share, participate, and take action. You can join the global movement by:

Sharing the World HSP Day message on social media - Post a short video or photo showing how you move—whether walking independently, using mobility aids, or a wheelchair.

Taking part in an international webinar - As part of World HSP Day, EUROHSP, Life4HSP, and Spierziekten Nederland will host an international webinar. Saturday, 17 October 2026 11:00 AM – 3:00 PM (CEST – Central European Summer Time) (Saturday, 17 October 2026 7.00PM to 11.00PM AEST; 8..00PM to 12 Midnight AEDT - in other time zones, please check your time against these times).
Registration: https://schoon-producties.webinargeek.com/world-hsp-day-webinar/join/cuxlu3wn

Organizing or supporting awareness activities
Sharing your personal story - this is something we encourage in terms of 'Living with HSP or PLS'
Encouraging others to get involved
Supporting scientific research through a donation
Every voice matters. Every action counts.

Watch and Share the World HSP Day Video https://youtube.com/shorts/LNGJAHlvOhc?is=MpnI5OoJza13861L

Together, across borders, we can raise awareness, strengthen research, and create real change.

Would you like to help make HSP visible?On October 17, share a ph...

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.