Earlier news
14 May 2026
PUBLICATION HIGHLIGHTS – March 2026 to May 2026
Publication Highlights – as seen in Autumn 2026 newsletter
4 May 2026
Goals of Care: Returning to What Matters Most
Article by CPN - Courageous Parents Network (as seen in Autumn 2026 newsletter)
4 Mar 2026
PUBLICATION HIGHLIGHTS – December 2025 to February 2026
Publication Highlights – as seen in Summer 2026 newsletter
20 Nov 2025
PUBLICATION HIGHLIGHTS – September to November 2025
Publication Highlights – as seen in Spring 2025 newsletter
25 Aug 2025
PUBLICATION HIGHLIGHTS – June to August 2025
Publication Highlights – as seen in Winter 2025 newsletter
15 Aug 2025
Meet our recent Fun Run Stars!
Recognising the efforts of those who participated in the Cairns Marathon and Sydney's City2Surf in July and August 2025
25 Jul 2025
Australian Doctors Orchestra - Concert for a Cause
Special event - NSW The Concourse, Chatswood 12th October 2025 at 2pm Tickets on sale
9 Jun 2025
Friday 9th June International Batten Disease Awareness Day
International Batten Disease Awareness Day Friday 9th June #ForgetMeKnot
22 May 2025
PUBLICATION HIGHLIGHTS – March to May 2025
Publication Highlights – as seen in Autumn 2025 newsletter
20 May 2025
Sponsor Alex in his City2Surf run!
Sibling story: about Alex - as seen in the Autumn 2025 newsletter
19 May 2025
Introducing the 'Batten Brief'
The Batten Brief, your go-to summary for all things research and medical in the world of Batten disease. Launching soon in 2025
5 May 2025
Anticipatory Guidance
Article by CPN - Courageous Parents Network (as seen in Autumn 2025 newsletter)
24 Feb 2025
PUBLICATION HIGHLIGHTS – December 2024 to February 2025
Publication Highlights – as seen in Summer 2025 newsletter
9 Dec 2024
PUBLICATION HIGHLIGHTS – September to November 2024
Publication Highlights – as seen in Spring 2024 newsletter
27 Aug 2024
Tern Therapeutics has announced its launch and entered into a global licensing agreement with REGENXBIO
26 Aug 2024
RESEARCH PUBLICATION - selected highlights
Publication Highlights – as seen in Winter 2024 newsletter
26 Aug 2024
City2Surf and Beach2Beach photo gallery 2024
Recognising the efforts of those who participated in Sydney's funruns this August 2024
25 Aug 2024
The town that turns PINK for Emily
The town of Laidley has backed Emily and her family to “Paint the town Pink” in support Batten disease awareness.
23 Jul 2024
'More Perils of Motorcycling' by Alanna Gayko
All about Alanna Gayko's new book and how to purchase - with proceeds donated to BDSRA Australia
26 Jun 2024
Batten Disease Awareness Day Photo Gallery 2024
We had a wonderful year creating awareness and fundraising this International Batten Disease Awareness Day
28 May 2024
RESEARCH PUBLICATIONS – SELECTED
Publication Highlights – as seen in Autumn 2024 newsletter
27 May 2024
Tribute to Michael Fietz
We thank Michael for all his involvement over the years as he steps down from Vice President
24 May 2024
Friday 9th June International Batten Disease Awareness Day
Friday 9th June is International Batten Disease Awareness Day and in Australia we like to #Bounce4Batten
30 Mar 2024
BDSRA Australia - Strategic Planning Meeting 2024
BDSRA Australia Board and Management Committee came together in Sydney and online for our 2024 Strategic Planning Day
4 Mar 2024
2024 Fun Runs!
Dates of Fun Run events around Australia in 2024 (as seen in the Summer 2024 newsletter)
28 Feb 2024
Research Publications – Selected
A selection of recent research publications in Batten disease are provided with summary and links December 2023 - February 2024 (as seen in Summer 202...
26 Feb 2024
Hollie's Bike
Hollie receives a modified bike that gives her independence and support, allowing her to be included in the family activity.
20 Dec 2023
CONGRATULATIONS to our 2023-24 BDSRA Australia Research Grant Winners!
We are delighted to announce the winners of this year's Research Grants, with a total of over $88,000 awarded to three projects.
4 Dec 2023
RESEARCH PUBLICATIONS – SELECTED
A selection of recent research publications in Batten disease - September-November, 2023 (as seen in Spring 2023 newsletter)
28 Nov 2023
Kiaana inspires
Kiaana, with the support of her dedicated mum Alicia, inspires our community with her achievements and overcoming the odds.
21 Oct 2023
National Carers Week High Tea
To celebrate National Carers Week, 15-21st October, BDSRA Australia organised a much deserved morning tea for our caregivers in greater Sydney.
11 Sep 2023
McWaters Family Raising Funds and Awareness for Batten Disease
From Bounce4Batten at Inflatable World to boxing tournament and raffles, the McWater family are doing fantastic fundraising!!
2 Sep 2023
Research Publications
Research Publications - Selected for Winter 2023 edition newsletter
28 Aug 2023
City2Surf and Beach2Beach photo gallery 2023
Fun Run photo gallery – as seen in Winter 2023 newsletter
2 Jun 2023
RECENT PUBLICATIONS
Find all the latest research publications here, as at the end of May 2023 - Selected for Autumn edition newsletter
30 May 2023
A new chapter for Fiona in Max's honor
Recently bereaved mum, Fiona Hallum shares how she’s finding her feet after the loss of her son Max. With the support of Carer’s NSW return to wor...
30 May 2023
BDSRA Australia visits Batten Disease research team, QLD Institute Medical Research
Ineka visits the QIMR Berghofer Medical Research Institute in Brisbane to meet with BDSRA Australia Research Grant recipient Associate Prof. Tony Whit...
28 May 2023
Friday 9th June International Batten Disease Awareness Day
Friday 9th June is International Batten disease awareness day and in Australia we like to #Bounce4Batten
25 May 2023
BDSRA Australia takes part in premier international meeting
Ineka attends the Gordon Research Conference (GRC) for Lysosomal Diseases in May 2023
17 May 2023
Research Grant Program 2023-24 Round – NOW OPEN!
BDSRA Australia is pleased to announce the 2023-2024 round of the Batten Disease Research Grant Program for Australia and New Zealand is now open
10 May 2023
CLN3 disease – ‘Batten-1’ clinical research update
Update on clinical trial and link to register interest for CLN3 (4-16 years)
29 Mar 2023
CLN3 disease: ophthalmological findings are crucial to early diagnosis
Understanding ophthalmological findings are crucial to early diagnosis and ongoing monitoring of CLN3 disease: an Australian-led study
14 Feb 2023
NCL Research Conference Report now available
Following the meeting, Dr. Whiteman prepared a Research Report for families, outlining many key updates across the current NCL research landscape. Do...
13 Sep 2022
BDSRA Australia launches 'Max and Abby' - A sibling journey with Batten Disease
23 Aug 2022
Wonderful to see the reach and meaningful impact of our Batten Disease Research Grant Program!
7 Apr 2022
Sibling Support
Ben & Alex are the older siblings of Emily, diagnosed with CLN3 Juvenile Batten Disease. Read how they've found support through Young Carers.
4 Apr 2022
Dementia Support Australia’s Childhood Dementia Support service
Dementia Support Australia (DSA) is here to support our families by providing practical, professional, tailored recommendations and management strateg...
3 Mar 2022
The Steve Waugh Foundation supports children and young adults living with rare diseases in Australia
10 Feb 2022
ASX Refinitiv Gala Auction
As one of the benefiting charities from the ASX Refinitiv Golf tournament and Gala dinner....
4 Feb 2022
Recruitment for Phase I/II trial in CLN3 disease now underway
The Beyond Batten Disease Foundation (BBDF) and Theranexus are now actively recruiting patients for its Phase I/II clinical trial.
20 Jan 2022
'Meet the Expert' Education Series are kicking off in February
BDSRA Australia is pleased to announce the first event in our 2022 'Meet the Expert' Educational Series with Dr Simon Cohen discussing Pain Management...
7 Dec 2021
MEET OUR RESEARCHERS
Associate Professor Anthony Cook at the Wicking Dementia Research and Education Centre, University of Tasmania has been awarded...
31 Oct 2021
A video from our friends at GETA to explain genetic disorders, like Batten disease.
A new video created to explain genetic disorders.
26 Oct 2021
A SPECIAL VIRTUAL COFFEE CATCHUP FOR BEREAVED FAMILIES
Nobody understands what is like to lose a child to Batten disease - other than another parent or carer who has also lost one.
25 Oct 2021
BDSRA Australia needs your support
BDSRA Australia needs your support to raise much-need funds for our important work!
8 Oct 2021
BATTEN DISEASE AND CHILDHOOD DEMENTIA TO FEATURE IN UNIVERSITY'S BACHELOR DEGREE
Drs Whiteman and Eccleston discussed Batten disease and childhood dementia, their prevalence, causes, treatments and family support mechanisms.
28 Sep 2021
BDSRA'S VISIT TO BATTEN DISEASE RESEARCH FACILITY, UNIVERSITY OF TASMANIA
Last Friday, our Head of Research, Medical and Scientific Affairs, Dr Ineka Whiteman (right), travelled to Hobart to meet with 2020 Research Grant rec...
16 Sep 2021
FDA Approval to Commence Studies in Gene Therapy for CLN5 Disease
We are excited to hear the announcement overnight that Neurogene's investigational gene therapy NGN-101 for the treatment of CLN5 Batten disease has r...
12 Sep 2021
CLN3 disease investigational therapy given FDA approval for clinical trial
We are excited to share the news that the Beyond Batten Disease Foundation (BBDF) together with Theranexus have received Investigational New Drug (IND...
8 Sep 2021
Childhood Dementia - Let's FACE it together
Thousands of Australian children are suffering and dying slowly from dementia, most will die before they turn 18, some will die in infancy. Batten dis...
3 Sep 2021
Ask-an-expert Back to school edition
Advocating For Your Child At School - free online webinar.
1 Sep 2021
Rare Metabolic Disease - Patient or Carer Experience Survey
This study aims to understand the current strengths and weaknesses in the healthcare system and will collect input from the metabolic healthcare workf...
26 Aug 2021
Young Carers Bursary - Young Carers Network - Carers Australia
The Young Carer Bursary Program (YCB) supports young carers to continue with their education. The program offers 1,000 bursaries of $3,000 each year. ...
19 Aug 2021
BATTEN CONTACT REGISTRY FOR FAMILIES - Keep in touch with upcoming Batten research and trials
The University of Rochester Batten Center (URBC) is a comprehensive Batten disease clinical and research center at the University of Rochester Medical...
17 Aug 2021
Virtual Coffee and chat with Alanna Gayko from the University of Newcastle, Australia
Zoom: Virtual Coffee and chat with Alanna Gayko from the University of Newcastle, Australia Friday 3rd September, at 11am (AEST)
16 Aug 2021
SUMMARY ARTICLE - An exploration of the diagnostic journey of children with Neuronal Ceroid Lipofuscinosis (NCL)
13 Aug 2021
Lincoln University Research
Supporting our scientists in the field. Our recent BDSRA Australia Research Grant recipients at Lincoln University NZ are doing wonderful work in the ...
5 Aug 2021
LX1004' Wins Orphan Drug and Rare Pediatric Disease Status
The U.S. FDA has granted both orphan drug and rare pediatric disease designations to LX1004, an investigational gene therapy for CLN2 disease, also kn...
11 Jun 2021
"Batten Disease Research – a UCL Perspective" - LIVE WEBINAR - Prof. Sara Mole, University College London (UCL)
28 May 2021
Isla
Thank you to Isla’s family for sharing their story and raising awareness about this terrible disease.
16 Dec 2020
2020 BDSRA Australia Batten Disease Research Grant Recipients
BDSRA Australia has awarded more than $177,000 across four projects in the 2020 Australia and New Zealand Batten Disease Research Grant round.
10 Dec 2020
*NEW* Resource - Music therapy for Batten disease
A new resource is now available on the BDSRA Australia website: 'The potential role of music to enhance the lives of children and young people with NC...
27 Nov 2020
ASX Refinitiv Charity Foundation
We are absolutely thrilled to announce the ASX Refinitiv Charity Foundation raised a whopping $235,752 yesterday through their ASX Trading Day.
24 Nov 2020
*NEW* Clinical trial resources for families!
We have created a new 'Clinical trials resources' section on the Resources page of the BDSRA Australia website.
17 Nov 2020
ASX Charity Trading Day - Thursday 26th November 2020
We are thrilled to announce that BDSRA will be one of the charitable beneficiaries of the first industry wide ASX charity trading day! ASX has pledge...
12 Nov 2020
Country Women's Association of Victoria's Thanksgiving Fund for 2020
What a honour it is that BDSRA Australia has been named recipient of the Country Women's Association of Victoria's Thanksgiving Fund for 2020!! It is...
2 Nov 2020
Expert Panel Discussion on childhood dementia in Australia on Wednesday 18 November at 12pm (AEDT)
We are delighted to extend an invitation on behalf of the Childhood Dementia Initiative, to attend an Expert Panel Discussion on childhood dementia in...
20 Oct 2020
CBD Treatment Found Effective for Severe Seizures in Batten Disease - A Case Study
Cannabinoids were used to successfully treat seizures in a patient with Batten disease for whom conventional therapies alone failed, according to a ca...
15 Oct 2020
International Dementia Conference Presentation
BDSRA Australia's Head of Medical & Scientific Affairs and Head of Research, Dr Ineka Whiteman, was invited to present at the International Dementia C...
3 Oct 2020
NEW Family Support Officer
Meet our new family support officer, Jennifer Buchanan. Jen is an extremely experienced social worker, working within the health sector with patients ...
17 Aug 2020
Passing of Lance Johnston, former BDSRA Executive Director (USA) and Batten dad.
25 May 2020
Bounce4Batten for International Batten Disease Awareness Day
As we approach International Batten Disease Awareness Day on 9 June, we are hoping you and your circle of friends can help us raise awareness for Batt...
12 May 2020
Batten Disease Research Grant Program 2020
BDSRA Australia is delighted to announce the launch of a new annual Batten Disease Research Grant Program for Australia and New Zealand.
6 Dec 2019
Latest research at the Australian Society for Stem Cell Research conference
Latest research by Wicking Dementia Centre at University of Tasmania
3 Dec 2019
Laureate Professor Ingrid Scheffer
New member of our Medical and Scientific Advisory Board, Laureate Professor Ingrid Scheffer AO MBBS PhD FAA FAHMS
20 Nov 2019
Professor Angela Morgan
New member of our Medical and Scientific Advisory Board, Professor Angela Morgan, NHMRC Practitioner Fellow.
28 Oct 2019
Dementia strikes children too
BDSRA Australia is excited to announce that it will be working with Dementia Support Australia (DSA).
24 Oct 2019
NEW Family Support Officer
BDSRA Australia is excited to introduce Ms Laura Smith as our new Family Support Officer.
24 Jun 2019
Juvenile Batten Disease Study
Mutated CLN3 Protein May Indirectly Promote Abnormal Signalling Cascades Involved in Juvenile Batten Disease
23 Jun 2019
Medication available to Australian children via Life-Saving Drugs Program
Batten disease medication Brineura available to Australian children via Life-Saving Drugs Program.
