BDSRA AUSTRALIA PRESS RELEASE 27 February, 2026

Philanthropic Funding Secured to Establish Australia’s First National Batten Disease Clinic Program

BDSRA Australia has secured philanthropic funding to establish the nation’s first coordinated National Batten Disease Clinic Program — a transformative step toward equitable, comprehensive care for individuals and families living with Batten disease.

Batten disease affects around 1 in 50,000 births in Australia. Caused by genetic mutations that impair the body’s ability to clear cellular waste, the condition leads to progressive brain degeneration and loss of previously acquired skills — including vision, mobility, speech, and cognition — alongside seizures and complex medical needs. Profoundly impacting families, Batten disease brings not only emotional and financial burden, but intensive and evolving medical needs that require highly specialised, coordinated clinical support.

Until now, Australian families have navigated fragmented care pathways without a unified national framework. This landmark philanthropic investment provides the foundation to change that.

The program will initially bring together leading clinical expertise in Sydney and Melbourne to design and implement multidisciplinary Batten disease clinics, within a nationally coordinated model of care accessible to all affected families across Australia. Agreed clinic standards, shared resources, and integrated care pathways will create the infrastructure necessary for consistent, world-class care and optimal patient outcomes — regardless of postcode.

Last week at Sydney Children’s Hospital, BDSRA Australia's Executive team met with Batten disease clinical experts from multiple Sydney and Melbourne sites to begin planning the implementation and governance of the program.

“This funding allows us to move beyond isolated services toward nationally coordinated clinics built around the specific needs of families,” said Dr Ineka Whiteman, Clinic Program Director and Head of Research and Medical Affairs at BDSRA Australia. “It lays the groundwork for sustainable, nationally aligned care that supports clinical excellence, research readiness, and future therapeutic access.”

Aligned with the international Batten Disease Clinical Centers of Excellence program based in the United States, the Australian clinics will integrate global best practice, enhance research participation, and ensure families have access to cutting-edge, coordinated care. The Clinics are projected to be fully operational and welcoming patient visits by mid-2026, marking a transformative milestone in the delivery of nationally coordinated, world-class care for families affected by Batten disease.

Photo: BDSRA Australia's Executive team meet clinical specialists from multiple Sydney and Melbourne sites at Sydney Children's Hospital on 18th February, 2026.

Pictured (L to R): Lauren Bradbury, Elizabeth Sanson, Kaitlyn Griffin, Dr Ineka Whiteman, Dr Alexandra Johnson, Prof. John Grigg, Katie Geering, Dr Tahmina Tabassum. On screen: Prof. Ingrid Scheffer, Dr Michael Fahey, Dr Jonathan Ruddle, Prof. Angela Morgan.

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For media inquiries contact: Nikki Hopkins info@bdsraaustralia.org