HSP Research Foundation

05/12/2025

December 2025 Campaign - Fund Research to Cure HSP Give Today!

What you give makes it possible to fund world-class research such as the SPG7 HSP study currently being conducted by Dr Gautam Wali of Neuroscience Research Australia (NeuRA). We are hoping to explore more research opportunities in 2026 with donations vital for these research projects to be undertaken.

A long term community member is planning to donate $1,000 to the campaign and has indicated he will double that amount if donations totalling $1,000 or more are received between now and 15 December 2025.

Season's Greetings to All.
In the meantime, a big thank you to all our donors to date and for those still planning to donate, and to our entire HSP Community, please accept our best wishes for the festive season and for a safe and happy 2026.

3 ways to give

Transfer online from your bank account, or use credit card, or PayPal

EFT
Electronic funds transfer (EFT) online from your bank or credit union.
Account name: HSP Research Foundation Inc
Bank: nab
BSB number: 082 294
Account number: 39 853 8301
Description: enter your name
Email the confirmation to admin@hspersunite.org.au and we will email you a tax receipt.

Credit Card
Click this link https://www.givenow.com.au/hspresearch to give by credit card. Online giving is kindly provided through the GiveNow service of OurCommunity. You will be emailed a tax receipt. You can also set up to give regularly.

PayPal
For speed and convenience, nothing beats PayPal. You don't even need an account.
Donate - https://www.paypal.com/donate/?cmd=_s-xclick&hosted_button_id=H45XRUZ9ZTKTU&ssrt=1718505080757

04/12/2025

An article from Brain&Life on 12 ways to build a healthy brain which is relevant for living with HSP. I thought, yes I know this but listing them made me realise that it was a good way to remind myself. The article provides a good explanation of each item.

1. Get adequate sleep.
2. Protect your mental health
3. Follow a healthy diet
4. Exercise
5. Stay connected
6. Avoid head trauma
7. Control blood pressure
8. Assess your metabolic and genetic risks
9. Take medications as prescribed and speak up when they’re tough to access
10.Reduce the risk of infections
11.Limit negative exposures
12.Advocate for equity

The American Academy of Neurology has convened experts from their vast network of specialists to identify 12 factors from the best available evidence that can influence a person’s brain health at all stages of life.

09/11/2025

Well done Jean Bernard and thank you for joining our AGM recently.

09/11/2025

The following link will take you to the recording of 2025 AGM on our Youtube page.

Recording of the Foundation's Annual General meeting for 2025 with presentation on SPG7 HSP Study.

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.