Researcher Spotlight: Professor Adam Vogel, CEO/Founder of Redenlab

21 May 2026

Sharing Prof. Adam Vogel's story and his commitment to improving the lives of those with complex neurodegenerative conditions

Announcement - Invest in Batten Clinics and Research

13 May 2026

Federal Budget highlights urgent need for investment in childhood dementia clinics and research

Hong Kong Four Trails Hike for BDSRA Australia - Mark Hiscoke

12 May 2026

An update from Mark Hiscoke as he hikes through the four major trails in Hong Kong, raising much needed funds for BDSRA Australia

International Batten Disease Awareness Day 2026 and Forget Me Knot

5 May 2026

International Batten Disease Awareness Day next month Tuesday 9th June 2026 #ForgetMeKnot

Researcher Spotlight: Dr. Lotta Oikari, QIMR Berghofer Medical Research Institute, Brisbane, Australia

8 March 2026

Sharing Dr Lotta's story and her commitment to Batten disease research (as seen in the Summer 2026 newsletter)

Announcement: Funding for Batten Clinic Program

27 February 2026

BDSRA Australia has secured philanthropic funding to establish the nation’s first coordinated National Batten Disease Clinic Program

2026 Fun Runs!

2 February 2026

Dates of Fun Run events around Australia in 2026 (as seen in the Summer 2026 newsletter)

Australian Doctors Orchestra - Concert for a Cause

15 October 2025

Thank you and update on the UNFORGETTABLE 'New World' concert in Sydney on 12th October 2025

BDSRA Australia Family Conference 2025

11 August 2025

Registrations are open! Friday 31st October to Sunday 2nd November Novotel Sunshine Coast Resort, Queensland

Advocacy in Action: Charleigh’s Journey

8 August 2025

Dr Ineka Whiteman's update (as seen in Winter 2025 newsletter)

New Research - Speech & Language in Batten disease

5 February 2025

Groundbreaking new research - CLN1 & CLN2 bowel dysmotility

18 January 2025