HSP Research Foundation

07/02/2026

For our Australian followers.

Many with HSP have problems with unruly bladders. Advance Rehab Centre (ARC) are holding a session on 12 February on the topic as part of their free webinar series. Register with ARC to participate in this opportunity. See details below.

https://khvu-hgp.maillist-manage.com.au/click/16127f39cc96696/16127f39cc93ac1

04/02/2026

Rare Disease Day is marked on the last day of February annually. In 2026, Rare Disease Day falls on Saturday 28 February. Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis for people living with a rare disease.

Globally, 300 million people worldwide live with a rare disease. Locally, Rare Disease Day is an opportunity to raise awareness and inform policymakers about the issues faced by the Australian rare disease community, with the aim to achieve the best outcomes for Australians living with a rare disease.

The Official Campaign Video of Rare Disease Day 2026- Learn more and get involved!👉 https://www.rarediseaseday.org/

30/01/2026

Rare Disease Day is on 28 February.

28/01/2026

Preklinisch onderzoek naar een mogelijke behandeling voor SPG11 laat positieve eerste signalen zien. Verdere data worden verzameld.

28/01/2026

To our Australian followers, the following relates to information sessions scheduled next week on the Disability Gateway.

You are invited to attend an information session via Zoom to be presented by Jeremy Rosenstrauss. Jeremy has been working with the Disability Gateway since 2024 and has been working in the disability sector since 2017. He will share information on the Disability Gateway, a free federally funded service that helps people with disabilities to find and connect with services in their communities.

Link to the Gateway website follows: https://www.disabilitygateway.gov.au/

We have scheduled 2 sessions, one in the afternoon/evening and one in the morning. Times in the different States have been provided so please select the one that best suits your calendar.

Afternoon/Evening Session
Time: Thursday Feb 5, 2026
6pm (Canberra, Melbourne, Sydney, Hobart)
5pm (Brisbane)
4.30pm (Darwin)
5.30pm (Adelaide)
3pm (Perth)
Join Zoom Meeting
https://us06web.zoom.us/j/87136370178?pwd=lV1sqSRyUUJlWZlIiNDYDMceGQZwdW.1

Meeting ID: 871 3637 0178
Passcode: 687183

Morning Session
Time: Friday Feb 6, 2026
7:30am (Perth)
10.30am (Sydney, Melbourne, Canberra, Hobart)
9.30am (Brisbane)
9am (Darwin)
10am (Adelaide)
Join Zoom Meeting
https://us06web.zoom.us/j/87267867002?pwd=jNy1wTjyKw6nLkmiHPe3AjSzbxGaH2.1

Meeting ID: 872 6786 7002
Passcode: 966750

Kind Regards
Ken

Ken Price
President

Information and services to help people with disability, their family, friends and carers, to find the support they need in Australia

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.