HSP Research Foundation

HSP Research Foundation We are the support group of the Australian HSP (hereditary spastic paraplegia) community. The HSP Re

The HSP Research Foundation was created in 2005 to find a cure for Hereditary Spastic Paraplegia - an inherited, degenerative disease affecting mainly the legs, causing muscle weakness and spasticity and severely impairing walking. The HSP Research Foundation is an incorporated, registered Australian charity, which facilitates and funds research to find a cure. The Foundation is also the community hub for HSPers in Australia, creating awareness and providing support and education. The Foundation’s sole purpose is to serve the HSP community and act in their best interests. The primary focus is on Australians with HSP, but just like HSP itself, which knows no ethnic or geographic boundaries, in some ways we serve the global HSP community of over 500,000. Each month, the website receives about 800 different visitors from 68 countries (75% from Australia) who view around 5,000 pages.

Well done Jean Bernard and thank you for joining our AGM recently.
09/11/2025

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

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

Happy Halloween. Thanks Arlo - looking good 😱😱
31/10/2025

Happy Halloween. Thanks Arlo - looking good 😱😱

31/10/2025
Wow. Well done to all!
31/10/2025

Wow. Well done to all!

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

On our theme of living with HSP, this article from Brain & Life made me think of the issues with HSP, for some the sympt...
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.




Thank you Zack for the photo toady to celebrate World HSP PLS Day. 👍👍
17/10/2025

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




Address

23 Aubrey Street, Stanmore
Sydney, NSW
2048

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