HSP Research Foundation

06/01/2026

The following link is to a Drexel University press release on SPG4 gene therapy research - this is seen as promising research. Researchers involved were able to prevent nerve breakdown and symptoms of HSP in a mouse model of the disease.

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...

06/01/2026

Welcome to 2026 and we wish all our followers the best for this new year. In case you missed it, thought we would recap on the research highlight for 2025. An update on the programme is scheduled for the end of January.

In mid-2025 the Foundation initiated and is funding a two-year, $200,000 research study aimed at discovering drug candidates for SPG7. This study uses patient-derived cells to understand how changes in the SPG7 gene affect the cell’s energy powerhouses (mitochondria) and to test potential treatments that could restore cellular energy. By creating a reliable lab model directly from human cells, we can study the disease and identify potential treatments without relying on animal models, aligned with the FDA’s and NIH’s new initiatives encouraging human-relevant research approaches. There would still be a long way to go to take a leading candidate through clinical trials, but it is definitely a step forward with SPG7 research to find a cure.

15/12/2025

Our followers may wish to follow Brain & Life which will now be online.

For the past 20 years, we have been proud to offer you Brain & Life from the American Academy of Neurology as a trusted, free resource on brain health. To serve you even better, we’re phasing out the print magazine version of Brain & Life and focusing on creating double the amount of content and resources online, in addition to continuing to produce the Brain & Life podcast and Brain & Life book series.

Learn more: https://hubs.la/Q03NgJFH0

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!