Batten Disease Support & Research Association

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

Ask-An-Expert: Navigating Joy and Sadness During the Holidays (TIME CHANGE)
2025-12-01 20:00 - 21:00 (America/New_York)
TIME CHANGE: This session will now begin at 8:00 PM EST on Monday, December 1.

Who’s Invited: Families caring for children with Batten disease and bereaved families
Join Jamie Freedlund for a gentle conversation about finding balance between joy and sadness during the holiday season. Together, we’ll explore ways to honor emotions, adjust traditions, and embrace connection in whatever form the holidays take. You will receive the Zoom link to join this session via email, along with reminders for the event, after you register.
Click here to learn more and register.

Ask-An-Expert: NCL Congress and BDSRA Australia Conference Updates (RESCHEDULED)
2025-12-09 19:00 - 20:00 (America/New_York)
UPDATE (11/18/2025): This event has been rescheduled for Tuesday, December 9, at 7 PM EST. If you’ve already registered, the Zoom link you’ve received in your registration confirmation email and email reminders is still the correct link to join the session.

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.

Coffee Chat
2025-12-12 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.

Holiday Grief Chat
2025-12-14 19:00 - 20:00 (America/New_York)
BDSRA, as part of its Life Goes On program for bereaved parents, and its facilitators are committed to providing the Batten community with regular opportunities to come together and share.
These virtual grief chats take place every other month at 7 PM EST. If you haven’t registered before, you only need to complete the registration form once, and you will receive a Zoom link that will work for all future Grief Chats and multiple email reminders before each chat.
You are not required to sign up for or attend each scheduled chat.
Click here to register.
These Grief Chats provide an opportunity for bereaved Batten parents to gather and support one another, regardless of where they are on their grief journey.
