Batten Disease Support & Research Association

Board of Directors Town Hall (Eastern Time Slot)
2025-11-09 19:00 - 20:00 (America/New_York) | Zoom
Virtual Town Halls with the BDSRA Foundation Board of Directors will be held quarterly. The dates for these Town Halls are:

Sunday, November 9, 2025
Sunday, February 8, 2026
Sunday, May 10, 2026
Sunday, August 9, 2026

Each of these sessions will have two time slots; please choose one of those time slots to attend per session. Those time slots are 7 PM EST and 7 PM PST.
Click here to learn more.

Board of Directors Town Hall (Pacific Time Slot)
2025-11-09 19:00 - 20:00 (America/Los_Angeles)

Coffee Chat
2025-11-14 12:00 - 13:00 (America/New_York)
Hosted by Batten parent Heather Dainiak, these chats are a safe space for parents and caregivers of all CLN types in the United States, Canada, and abroad—no pressure, no obligation—just understanding, connection, and a chance to breathe.
NOTE: You only have to complete the registration form ONCE, and you will receive the Zoom link for all future Coffee Chats. The Zoom link will remain the same for all chats. You will also receive email reminders for each upcoming Coffee Chat.
Click here to register.

Ask-An-Expert: NCL Congress and BDSRA Australia Conference Updates
2025-11-18 19:00 - 20:00 (America/New_York)
Let’s dive into some research and clinical updates!
After attending the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL) and BDSRA Australia’s Family Conference, BDSRA Head of Research & Medical Affairs, Ineka Whiteman, PhD, and Jonathan Cooper, PhD, of Washington University in St. Louis, will recap the events, share updates, and answer your questions.
Click here to learn more and register.
