Batten Disease Support & Research Association

Coffee Chat
2025-06-27 12:00 - 13:00 (America/New_York) | Zoom
Hosted by Batten parent Heather Dainiak, these chats are a safe space for parents and caregivers of all CLN types—no pressure, no obligation—just understanding, connection, and a chance to breathe.
June Theme: When Summer Feels Overwhelming Navigating the End of the School Year
The end of the school year can bring mixed emotions—graduations, moving-up ceremonies, and the reality of watching other children grow while yours faces a different path. As routines shift and summer begins, this chat is a space to discuss the stress, sadness, and uncertainty that this season can bring.
Dates (choose one session):

Tuesday, June 24 at 8 PM EDT
Friday, June 27 at 12 PM EDT

If you’ve already completed the registration form, you don’t need to again. You will receive reminder emails for upcoming chats along with the Zoom link. That Zoom link will work for future Coffee Chats.
Click here to register.

2025 BDSRA Annual Family Conference
2025-07-11 - 2025-07-13
CLICK BELOW FOR ALL INFORMATION ON THE 2025 BDSRA ANNUAL FAMILY CONFERENCE IN LINCOLN, NEBRASKA!
CLICK HERE.

Board of Directors Application Deadline
2025-08-31
Our Board of Directors makes a difference for the Batten community. Are you ready to make an impact?
Apply to join the Board of Directors by August 31! Visit the application to see the full description and qualifications.
CLICK HERE TO VIEW THE APPLICATION.

Ask-An-Expert: Understanding ABLE Saving Plans
2025-10-15 18:00 - 19:00 (America/New_York) | Zoom
ASK-AN-EXPERT RETURNS!
Mark your calendars for Wednesday, October 15, at 6 PM EDT, for the next virtual Ask-An-Expert, featuring Stacy Pfeifer, Director of Enable Savings Plan. Stacy has been with the Nebraska State Treasurer’s Office for 13 years and the Director of Enable for 3 ½ years. Stacy educates individuals about Enable accounts through presentations and resource fairs.
Click here to learn more about Stacy and register.

NCL 2025 in Australia
2025-10-28 - 2025-11-01
On behalf of the NCL2025 Organizing Committee, BDSRA Australia is thrilled to be hosting the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL) in the stunning surrounds of the Sunshine Coast, Queensland, Australia. As the premier conference on Batten disease, the bi-annual NCL Congress brings together world-leading researchers, healthcare providers, industry partners, innovators and patient advocacy leaders from around the globe.
BDSRA Australia looks forward to welcoming you to the Sunshine Coast in October 2025 for what promises to be a truly memorable event.

Stephanie Hughes
Chair
NCL 2025 International Congress

Ineka Whiteman
Chair
NCL 2025 International Congress &
BDSRA Australia Family Conference 2025

Abstract Submissions are now open for the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL).
Submit your abstract to play an important role in NCL 2025!

REGISTER HERE

Abstract Submissions are now open for the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL).
Submit your abstract to play an important role in NCL 2025!

SUBMIT YOUR ABSTRACT HERE

NCL 2025 is has secured discounted rates for the Congress and bookings can be made via Groups 360, which is external to the registration system. This booking process will provide delegates with greater flexibility to add extra nights, breakfast offerings as well as including any hotel loyalty programs.
BOOKINGS WILL CLOSE ON WEDNESDAY, JULY 30, 2025

VIEW THE INSTRUCTIONS VIA THE WEBSITE

There is a range of sponsorship and exhibition opportunities available at NCL 2025. To receive a copy of the 2025 Sponsorship Prospectus, or for any sponsorship enquiries, please contact:
Travis Clarke travis.c@asnevents.net.au

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) | Zoom

Ask-An-Expert: Navigating Joy and Sadness During the Holidays (TIME CHANGE)
2025-12-01 20:00 - 21:00 (America/New_York) | Zoom
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) | Zoom
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) | Zoom
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) | Zoom
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.
