HSP Research Foundation

27/05/2026

The following was provided by Belynda who contacted the Foundation to arrange fundraising for the 12km HBF Run for a Reason in Perth.

“My husband Paul has HSP SPG7 complex. He’s been training relentlessly and today (24 May) he completed the 12km HBF Run for a Reason in Perth…in a manual wheelchair completely by himself! I am really very proud of him.

Our son and myself also completed it, a little faster as we were running. Our nephews and niece stepped in as Paul’s support crew, they started a little later and never caught up to
him!

Our reason…raising funds for HSP research.”

Thank you Belynda for your efforts and the rest of the support team and the donors to your fundraising campaign which is greatly appreciated. Well done Paul, congratulations on this achievement and hope you enjoy the new Foundation cap.

25/05/2026

In recognition of all those volunteers.

The Foundation is a totally volunteer based entity and values the contributions from all our volunteers.

14/05/2026

An article on exercising well worth a read.

Learn when it’s safe to exercise after a neurological diagnosis, how to start slowly, and why physical therapy, trainers, and community support can help.

25/04/2026

Lest We Forget🇦🇺

"They shall grow not old, as we that are left grow old;
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning
We will remember them." - The Ode

21/04/2026

We previously reported on Community member Jason and his travels undertaking assessments of accessibility for people in wheelchairs, and others with walkers. At the request of Councils, Jason’s employer arranges for him to undertake mapping of streets and facilities to provide a map of disability friendly locations/routes for getting around.

Jason was recently in Brisbane undertaking a significant mapping undertaking and we managed to catch up with him for dinner and a chat about his undertakings.

14/04/2026

Advance Rehab Centre are holding an online webinar on Neurological Fatigue at 1 pm AEST on April 21 as part of the free webinar series. Registration is required to attend the webinar or to receive the recorded version later on.

📣 FREE Patient Webinar

⭐ Beyond Tired: Understanding and Managing Fatigue ⭐

If you have a neurological condition and you struggle with fatigue, you’re not alone.

This webinar with neurological Occupational Therapist Natalie Holland, will help you understand this very common symptom, explore contributing factors, and provide practical strategies to help you start to take control of your fatigue, so that you can do more of what you want to do.

When: 21st April, 1pm AEST
Where: Online and Free

Register here:

https://bit.ly/3Q1dfTC

11/04/2026

We thought our Australian followers may interested in the webinar; details contained within Rare Voices Australia post.

04/04/2026

Happy Easter

16/03/2026

The Foundation is listed.

New rare disease pages and resources continue to be developed over time on the Rare Awareness Rare Education (RARE) Portal.

If you are looking for information about a specific rare disease, visit the Rare Disease Directory. Support groups and personal stories are listed for each condition where possible.

Visit rareportal.org.au for more information.

02/03/2026

What a good event for Rare Disease Day. Well done to all.

02/03/2026

To our followers who may not have seen the ARC Webinar on Understanding Neurogenic Bladder on 12 February, here is a link to ARC's website and the recording - if you provide your email address and name they will forward the recording to you.

The session covered various issues like urgency and retention and highlighted the need for people with disabilities to take action and not ignore on the basis of balance issues affecting mobility and the higher risk of falling if rushing to the toilet.

Understanding Neurogenic Bladder An informative session designed to help patients and caregivers understand neurogenic bladder, its causes, symptoms, and treatment options. The webinar covers practical management strategies, and available therapies and referral options and space for patient question...