HSP Research Foundation

31/10/2025

Happy Halloween. Thanks Arlo - looking good 😱😱

31/10/2025

31/10/2025

Wow. Well done to all!

30/10/2025

Sharing Dr Wali's post following our 2025 AGM last Tuesday.

Excited to share that Carolyn Sue MB BS, PhD, FRACP and I at NeuRA (Neuroscience Research Australia) have received new funding support from the Hereditary Spastic Paraplegia Research Foundation, Australia (https://lnkd.in/g7vy-6hm) to advance a drug discovery study focused on SPG7 Hereditary spastic...

29/10/2025

28/10/2025

In the process of preparing and a reminder to our Community members for our AGM tonight.

Annual General Meeting of the HSP Research Foundation
Tuesday, 28 October 2025 at the following time:
• 5-6pm AWST (Western Australia)
• 7-8pm AEST (Queensland)
• 7:30-8:30pm ACDT (South Australia)
• 8-9pm AEDT (Tasmania, Victoria, ACT, New South Wales)
• For members in other countries, the time reference is 9-10am UTC.

Agenda
• Opening Welcome, Acknowledgement of traditional custodians and Apologies.
• Confirmation of Minutes from last AGM.
• Annual Report for 2024/25.
• Election of Office Bearers & Committee Members.
• Guest Session - Dr Gautam Wali, Neuroscience Australia (NeuRA)
• General Business
• Close & Meeting Evaluation.
• Join Zoom Meeting -
Meeting ID: 817 2960 6439
Passcode: 212469

22/10/2025

On our theme of living with HSP, this article from Brain & Life made me think of the issues with HSP, for some the symptons may not be invisible but in any event the headings in the article are relevant and things we should consider. For example, the person serving at a bar offered to take my drink back to my table at lunch recently, no doubt they saw me walk up - I was more than happy to accept the offer of help!

People with invisible disabilities often face judgment and misunderstanding. Neurologists share strategies for managing symptoms, advocating for themselves, protecting mental health, setting boundaries, and finding support to improve both physical and emotional well-being.

19/10/2025

Members in Bacchus Marsh Victoria belatedly celebrating World HSP PLS Day.

17/10/2025

Thank you Zack for the photo toady to celebrate World HSP PLS Day. 👍👍

17/10/2025

Happy World HSP PLS Day. Thank you Sharon and Tracy for your gesture photo today.

17/10/2025

17 de octubre, Día Mundial de la Paraparesia Espástica Familiar. El eslabón ya es compartido por todo el mundo. 19 asociaciones de 15 países alzamos la voz al unísono para visibilizar a enfermos y familiares. Juntos tenemos más esperanza.

15/10/2025

Friday 17th October is World HSP and PLS day.
HSP and PLS are , and there are teams of researchers around the world increasing understanding and exploring treatment options.

Symposia and conferences are amazing places where information is shared.

Shown here are:
Tom Wahlig - https://www.hsp-info.de/en/researchers/symposia
Spatax - https://spatax.wordpress.com/
SP CERN - https://spcern.childrenshospital.org/
PROSPAX - https://www.prospax.net/
Treat HSP - https://www.treathsp.net/

13/10/2025

Let's get ready for World HSP PLS Day.

13/10/2025

Thank you Gulsen for your Gesture photo to support World HSP PLS Day this coming Friday.

13/10/2025

Further to our earlier photo of Dave; Dave has managed to interlock his fingers to achieve the gesture and be ready for 2025 World HSP PLS Day. Well done Dave.

13/10/2025

If you're looking for resources about HSP, there are a few places to look. All of the 19 organisations taking part have a website.
You can also look at YouTube from us and SpasticParaplegia World
Researchers in Germany and France have also developed two movement programmes:
https://www.treathsp.net/klinik/physiotherapie
https://brainmouv.com/

12/10/2025

The gesture for 2025 World HSP PLS Day from a gathering in Western Australia for the Australian HSP PLS Support Group.

12/10/2025

Thanks Tracy for your photo of the Brisbane linking to celebrate the 2025 gesture for HSP PLS World Day.

11/10/2025

Thanks Dave for sharing. Dave wanted to share his progress in working toward linking up for World HSP PLS Day - keep an eye out for the linked version to come. 😄

11/10/2025

Thought I would share what our Friends in Spain are doing to celebrate World HSP PLS Day.

17 de octubre, Día Mundial de la Paraparesia Espástica Familiar y de la Esclerosis Lateral Primaria.

October 17, Hereditary Spastic Paraplegia and Primary Lateral Sclerosis World Day.

10/10/2025

Thank you Folasade for sharing. ❤️

Hoping to share more HSP PLS gestures over the next few days leading up to World HSP PLS Day on 17 October.

10/10/2025

10/10/2025

Sharing what our Friends in the UK HSP group are doing to celebrate.

Help us mark the first HSP and PLS World Day. Send us your photos so we can share them on October 17th. You can have a photo of:
* You making the gesture
* Lots of you making the gesture
* Just the gesture
* Just you
If you cannot use our frame, we can help. When you see pictures like these, please like them and share them to your followers!

10/10/2025

World HSP PLS Day 17 October

Members linking together in Brisbane to celebrate the World HSP PLS Day gesture for 2025.

07/10/2025

As part of the upcoming World Day for HSP/PLS, the Spastic Paraplegia Foundation will be hosting a 24-hour global Zoom call to bring together all 15 countries and 17 organizations for a truly international gathering.

A calendar grid of time-slots has been created so that each country or organization can choose a time that works best for them to connect with their community, share updates, or simply extend a message of solidarity.

There is no pressure to participate, but we encourage everyone to join at a time that is convenient - each voice adds to a unifying message of hope and connection across borders.

For our Australian members, we have reserved 4am US Central time on 17 October which converts to:

17 October -
Queensland - 7pm AEST
NSW, Vic, Tas and ACT - 8pm AEDT
SA - 7.30pm ACDT
NT - 6.30pm ACST
WA - 5pm AWST

We ask that everyone register in Advance at this link: https://us02web.zoom.us/meeting/register/WyIJ23XfQgeqg2gKe7aqMA . After registering, you will receive a confirmation email (ignore time showing which will be 12am which is the start time in USA) containing information about joining the meeting with the official Zoom link. The link will remain open all day until late evening on Oct 17, 2025 US Central time.

04/10/2025

On October 17th, HSP and PLS communities around the world will unite to raise awareness for these rare diseases.
This year, 17 associations and 3 foundations from 15 countries are participating in a global campaign.
Our symbol for 2025 is the interlocked finger gesture (refer photo below):
Join the tips of your left thumb and pointer finger.
Join the tips your right thumb and pointer finger.
Interlock them like a chain link.

Here’s how you can join:
How to Add Your Photo to the Worldwide HSP Day Frame on
Instagram
Step 1: Save the Frame (Frame below)
Download/save the official HSP Day frame to your camera roll

Step 2: Take Your Gesture Photo
Make the HSP gesture:
Chain link made of two finger loops
Take a photo of yourself (face optional) or just of the gesture.

Step 3: Open Instagram
Tap the “+” symbol at the bottom center of the screen.
Choose Story.

Step 4: Add the Frame
Tap the bottom-left preview to open your camera roll.
Select the HSP and PLS World Day frame.

Step 5: Add Your Photo on Top
At the top of the screen, tap the square smiley icon.

Tap Photo.
Select your gesture photo.
It will appear on top of the frame.

Step 6: Adjust & Publish
Use two fingers to resize or move your photo until it fits.
When you’re happy, tap the arrow in the
bottom-right corner to publish your Story.

Send Your Photo
In addition to posting on Instagram, please email your gesture photo to

Important: Name your file as: gesture.jpg
Together, we will show the strength of our worldwide HSP and PLS community.

With gratitude

30/09/2025

Congratulations Dayna.

29/09/2025

The words 'confidence' and 'relearning' ring true but the word 'determination' is clearly on display. Well done Arlo.

28/09/2025

Community Member Julian reported in ABC News concerning accessibility for Bondi to Bronte.

Disability advocates are calling for accessibility upgrades to a popular coastal walk that has been ravaged by recurring bad weather.

27/09/2025

Hi All,

We have been approached to share an Updated Childhood Onset HSP Survey which fits in with our global approach.

Their first survey report is contained in the following link.

https://blassig.paperturn-view.com/?pid=MzA305248&v=24.1%5D

The survey relates to childhood onset of HSP and if this relates to you, please feel free to complete the survey - the message from the organisers follows:

"Dear HSP Research Foundation,

We are reaching out to ask for your support in amplifying the second version of the Childhood Onset Hereditary Spastic Paraplegia (HSP) Survey. First launched in 2021, this survey remains the primary source of parent and self-reported information on diagnosis, daily life, and the overall experience of living with Childhood Onset HSP. Our initial report has been viewed more than 1,400 times across 35 countries, and the data helps us tell the story of what Childhood Onset HSP means to us and our children and inform those who can help with early identification and symptom treatment.

The 2025 survey includes new sections on seizures, school experiences, and spasticity treatments. Families who participated previously will have the opportunity to update their responses, while new participants can share their experiences for the first time. The survey takes less than 15 minutes to complete, and every response adds to a clearer picture of what children and families face.

We would be grateful if your organization could help us share this survey with your members and community. The more families we reach, the more accurately we can reflect the diverse experiences of childhood-onset HSP—information that is essential for advancing early identification, improving care, and shaping future research.

Survey Link: https://docs.google.com/forms/d/e/1FAIpQLSfhAecdHZBoUH7DSpifJlI-L1u2KFbkyAzoqans_sLE8aq8OA/viewform

If you have any questions or would like additional information to share with your community, please contact us at ChildhoodHSP@gmail.com.

Thank you for partnering with us to strengthen the global HSP community and give children and families the visibility they deserve.

With appreciation,

The Childhood Onset HSP Survey Coordinators,

Bridget Lassig, Ece Feliz, Liz Majewski, & Zona Reid"

Hereditary Spastic Paraplegia Childhood Onset Survey 2022 Public Report February 28, 2023 DRAFT 0

27/09/2025

On October 17th, HSP and PLS communities around the world will unite to raise awareness for these rare diseases.

This year, 17 associations and 3 foundations from 15 countries are participating in a global campaign.

Watch the Video below

26/09/2025

We’re proud with the launch of a World Day dedicated to raising awareness for our rare neurological conditions — the result of unprecedented global collaboration between HSP PLS Associations, Federations and Foundations across the world.

Why this date?

We chose it to honor two giants in neuroscience: Camillo Golgi and Santiago Ramón y Cajal, who were awarded the Nobel Prize in October 1906 for their groundbreaking work on neuron structure
Golgi’s discovery of dictyosomes and his innovative staining method enabled Ramón y Cajal to develop the neuronal theory, thus laying the foundation for the neuron doctrine. For this reason, Santiago Ramón y Cajal is considered the father of neuroscience.
Their discoveries laid the foundation for understanding the nervous system and, ultimately, the diseases we work to raise awareness about — like Hereditary Spastic Paraplegia and Primary Lateral Sclerosis.

By celebrating this day, we’re not only remembering the past — we’re pushing forward for research, recognition, and support for all those affected today.

25/09/2025

Join Us on the Road to HSP PLS World Day! 🧬
This year marks a historic step forward: for the first time ever, HSP and PLS associations from around the globe are uniting to establish HSP PLS World Day – a day dedicated to raising awareness, building community, and pushing forward toward a cure for Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS).
Together, we are Stronger. Together, we speak louder. Together, We Want to Get Cured.
That’s our motto – and our mission.
🗓 From today until HSP PLS World Day, 17th October, the various associations will be sharing stories, facts, and calls to action to shed light on these rare, neurodegenerative diseases that deserve global attention and research.
We invite you to:
✅ Share our posts
✅ Tell your story
✅ Use the hashtags :
✅ Help us raise Awareness and Hope
Let’s make noise. Let’s be visible. Let’s make change happen – Together.
Follow us, tag your posts, and stay tuned.
Because Awareness is the first step to the Cure.

28/08/2025

On our theme of Living with HSP, we came across the article on financial scams relating to cognitive decline, which can be an issue for some HSP types but regardless, the article relates to real life experiences where money is lost through scams which in Australia, reported scams in 2024 totalled $2B.

What can be done to avoid scams?

This week in Australia is Scam Awareness Week and Scamwatch, an Australian Government body, has a 3 step approach, Stop. Check. Protect. From the Scamwatch site:

'Scams are everywhere, targeting people from all walks of life and costing Australians billions of dollars each year. Whether it’s fake emails, unexpected phone calls or online schemes, scammers always find new ways to gain your trust and steal your money or personal information. But 3 simple steps can help keep us all safe from scammers.

STOP.
Don’t give money or your information to anyone if unsure.
Scammers will pretend to be from organisations you know and trust like businesses, the police, your bank or government services. They will offer to help you or ask you to verify your identity with them.

CHECK.
Ask yourself if the message or call is fake.
Never click a link in a message. Only contact businesses or government using contact information that you find yourself from their official website or app. If you’re not sure, say ‘no’, hang up or delete.

PROTECT.
Act quickly if something feels wrong.
Contact your bank if you notice unusual activity or if a scammer gets your money or information. Seek help and report the scam to Scamwatch. When you report scams, you help us stop the scam and warn others.'

If unsure about something, don't hesitate to check with family, friends, or carers.

My background is in accounting, finance and audit and I am well aware of the need to protect myself and the Foundation from potential scams. Some additional thoughts from material I have read -

• Say no, hang up, or delete suspicious messages.
• Take time to think before responding to unexpected requests.
• Don’t let anyone pressure you into immediate action.
• Trust your instincts if something feels wrong.

Make sure the person or organisation you’re dealing with is real.
• Contact the organisation directly using details you find on their official website or app. Do not use contact details provided to you by the sender or caller.
• Look for extra letters, symbols or numbers in the web address for signs of a fake website.

In emails, check the actual address the email has come from. The sender details might seem genuine eg 'Meta Security' but when you hover over the sender name, the underlying email address will appear - eg 'damin_martinxx_999@SomethingNotReal.christmas'

Please be careful.



https://www.scamwatch.gov.au/research-and-resources/scams-awareness-week-2025

https://www.brainandlife.org/articles/cognitive-decline-financial-struggles-scams-look-for?utm_medium=email&utm_content=377607633&utm_source=hs_email

As people age, cognitive changes can raise their risk of money problems, including falling for scams. Learning what to look for can help keep their finances safe.

27/08/2025

For our members in and around Brisbane.

The Brisbane Disability Expo will link thousands of people with a disability with hundreds of product and service providers as well as a range of informative and interactive presentations delivered by industry experts.

22/08/2025

Well done Grogu (aka Arlo)

17/08/2025

I have read some stories of people with HSP coming home from hospital and I thought this article might be of interest. I know myself, if I am immobilised for a period, balance and walking are more difficult.

Many patients lose strength, mobility, and stamina during a hospital stay. To help them get back in shape—or make the most of rehabilitation—after being discharged, caregivers should consider these recommendations.

09/08/2025

A community member provided the following in response to his actions in Living with HSP.

“I want to start up by saying I don’t see HSP as a disease or a disability but as a condition that I was born with, and it is just part of my life. When you label something as a disease or disability it automatically has a negative connotation attached to it and people start to feel sorry for you or treat you differently. There are enough sections of society these days seeking the victim-mentality and I for one do not want to be one of those people. I am lucky in that I have good mobility, however, the HSP is obviously there because I know my gait is not as good as it should be and the constant questions of ‘What did you do to your leg?’ (that I am sure we all get) is a common part of my day.

But like any condition, you can either use it as an excuse to avoid things or you can look at the positives and adapt your lifestyle to still live it to the fullest. When I was in my teens and 20s I used to enjoy long distance running and cross country running and the HSP didn’t seem to have any affect on that at all. I managed to complete both the Gold Coast half-marathon and marathon several times over the years and was an active runner with my dogs. I used to play a lot of cricket and tennis growing up and movement around the court was never an issue.

As I approach 40, the mobility isn’t as good as it was and it is a bit more of a struggle to run the long distances, so instead I got more into bushwalking. My two kids and I love camping, and they too love the bushwalking, so we head off camping 5 or 6 times a year to somewhere with bushwalking tracks available – some short and some quite long. There are spots along the tracks I need to take extra care to not trip but the HSP does not prevent me from enjoying it.

In 2024, I went over and completed the Kokoda Track in PNG and had no issues, went fast up the hills and a steady pace on the declines. I recall walking in for dinner the first night at the hotel and others on the trek, who had obviously seen my gait, asked me if I was going to have any issues completing it. The first night at camp on the track no one was questioning my ability. One of the hikers asked me about my legs and I explained to them that I have HSP, and they congratulated me on this amazing achievement and how great it is I could do the track. This made me feel a bit weird that they thought me completing it was a greater achievement than anyone else in the group. My reply was simply that I have excellent fitness, I am a very active person and there is nothing wrong with me, I just happen to walk differently to others. When Kurt Fearnley crawls the entire 96km track in 10 days surely walking it with a slight limp is nowhere near as impressive.

I have since done other multi-day hikes, play touch football weekly and still work as an operational police officer and auxiliary firefighter with nothing preventing me from continuing this. I am a regular at the gym doing strength training to keep both my upper body and lower body strong.

I know that over time the HSP will worsen and there may be a time I require mobility aides or a wheelchair and if that time ever comes then I will adapt my life and get involved in something that I can enjoy and continue to live my life to the fullest. There is always someone doing it tougher and harder than me. I have life, fitness, supporting friends and family, a career, and the ability to still enjoy life. The best way for me to live with HSP is to keep enjoying what I am doing and along the way just adapt where I can to keep enjoying what I am doing."

03/08/2025

Community member, Tracy, has informed us that her daughter, Indi, is participating in the GC50 Run Festival on the Gold Coast in October and Indi has set up a fundraising page with the Foundation as the nominated charity. Thank you Indi.

10 years ago my mum was diagnosed with HSP, which is a neurological condition that affects the muscles in her legs. She is now, almost always, confined to a wheelchair. Mum having lost the privilege to walk, let alone run, is what has inspired my running journey. Her story is a daily reminder to mov...