Dr Ineka met with the University of Rochester Batten Center (URBC) team members Dr Jon Mink, Dr Heather Adams and Amy Vierhile to discuss current clinical research updates, academic research opportunities and ongoing natural history studies. With a number of our Australian families already connected with the URBC natural history studies, it is wonderful to see our collaborations with the Rochester team growing and continuing.

In Chicago, the international NCL patient advocacy groups from Australia (BDSRA Australia), USA (BDSRA Foundation), UK (Batten Disease Family Association) and Serbia (Baza retkih bolesti) met to discuss and plan practical ways we can collaborate moving forward, to create a truly 'global voice' for the Batten disease community. Watch this space!

Following this, Ineka attended the Translational Research Conference for the Management of NCLs. Held every two years, this invitational meeting brings together world-leading scientists, clinicians and industry experts for two intensive days of data- and knowledge-sharing. Not only does this meeting attract many of our community's most experienced NCL researchers and clinicians, but also subject matter experts from a variety of other fields whose innovative research, techniques and insights help develop and inspire our current approaches to NCL research and management. Themes during the course of the meeting were: development and application of gene technologies, other biologics and small molecule therapies; biomarker and natural history studies; impact of NCLs on sleep, gut motility and the peripheral nervous system.

A summary of these key learnings will be shared at this weekend's Family Retreat in Sydney, and in a forthcoming newsletter. Stay tuned!

BDSRA Australia would like to thank the Beyond Batten Disease Foundation for generously providing a travel grant for Ineka’s attendance at the NCL Translational meeting, and the Our Promise To Nicholas Foundation for hosting this brilliant and fruitful meeting!

In photos: Joanna Nightingale, Amy Fenton-Parker, Amanda Mortensen, Dr Jill Weimer, Dr Ineka Van Zyl Whiteman, and attendees at NCL Translational 2022 (photo courtesy Heather Noyes Dainiak).