Batten Disease Support & Research Association

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

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
2026-01-16 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.
Session Details: A space to pause, breathe, and reflect on the small lights that carry us through the winter months—connection, hope, and one another.
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.

CLN7 Community Update
2026-01-21 10:00 - 11:00 (America/New_York) | Zoom
Elpida Therapeutics invites you to join a Zoom meeting on Jan. 21 for a special community update on the progress toward a therapy for CLN7 disease. This is an opportunity to hear directly from the Elpida team about the work of bringing new treatment options to patients and families.
During the session, Elpida will share:

The latest on a new gene therapy clinical trial
Timelines for the trial and next steps
How patients are being selected for participation

Join Elpida Therapeutics to stay informed, ask questions, and connect with others in the CLN7 community. Your engagement and support are vital as Elpida works together toward a future with better treatment options for CLN7 patients.
ZOOM SESSION DETAILS:
Topic: CLN7 Community Meeting
Time: January 21, 2026 09:00 AM Central Time (US and Canada)
Join Zoom Meeting
https://us02web.zoom.us/j/9890666291?omn=81458092431
Meeting ID: 989 066 6291
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Join instructions
https://us02web.zoom.us/meetings/81458092431/invitations?signature=25AUZyyuTGo6oR-JWkq1jgEQ45RY04SHzCBew3Ui90M

Ask-An-Expert: Fundraising & Fam Funds 101
2026-01-21 18:00 - 19:00 (America/New_York) | Zoom
Session details: Join us for a practical, beginner-friendly conversation about fundraising, designed to support families and community members looking to learn where to start. This session will also include a Q&A.
Please complete the registration form by clicking here to receive the Zoom link to join this session!
Visit our Fam Funds page here.

Board of Directors Town Hall (Eastern Time Slot)
2026-02-15 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 15, 2026
Sunday, May 10, 2026
Sunday, August 9, 2026

Each session will have two time slots; please choose one to attend. Those time slots are 7 PM EST and 7 PM PST.
Question Submission

A live Q&A will be featured in these Town Halls. If you’re unable to attend either Town Hall session or prefer not to ask your question during the live sessions, you may submit a question anonymously by emailing your question(s) to bdsramarketing@gmail.com.

Please include “Town Hall Question” in the subject line. These submitted questions may be answered during the live sessions. Not all submitted questions may be answered due to time and appropriateness.
Click here to learn more.

Board of Directors Town Hall (Pacific Time Slot)
2026-02-15 19:00 - 20:00 (America/Los_Angeles) | Zoom

Panda Express Fundraiser
2026-02-27
CLICK HERE FOR DETAILS!

No-Show St. Patrick's Day Dinner Fundraiser
2026-03-17
CLICK HERE TO LEARN MORE AND PARTICIPATE

Conference Volunteer Meeting
2026-03-18 17:00 - 18:00 (America/New_York)
Annual Family Conference Volunteer Info
1. Get all the details here.
2. Email Heather@bdsrafoundation.org and indicate which committee they would like to join.
3. Sign up for the Volunteer Email List, click here.
Meetings with 2026 BDSRA Annual Family Conference Volunteers will be at 5 PM EDT on the dates listed below. You will receive reminder emails from BDSRA with the Zoom link to join each meeting after you sign up for the email list:

Wednesday, March 18
Wednesday, April 15
Wednesday, May 20
Wednesday, June 17

Monthly Coffee Chat
2026-04-16 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.
Session Details for April 16: When sleep is hard, everything can feel heavier. This Coffee Chat is a space to connect with fellow Batten parents, share what your nights have been like, and talk openly about the challenges of rest while caring for your child. Come as you are and know you are not alone.
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.

Grief Chat
2026-04-19 19:00 - 20:00 (America/New_York) | Zoom
The next scheduled chat is Sunday, April 19, 2026, at 7 PM EDT.
Session details for April 19 – Anticipatory Grief: How do I move forward when my family has not? Grief can move at different speeds, and it can be especially hard when your path forward feels different from those around you. This space offers gentle support for sharing, reflecting, and moving forward while honoring your grief.
REGISTERING: You only need to complete the registration form below once, and you will receive a Zoom link that works for all future Grief Chats, along with multiple email reminders before each chat. You are not required to sign up for or attend each scheduled chat.
About the BDSRA Grief Chats: 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 and provide an opportunity for bereaved Batten parents to gather and support one another, regardless of where they are on their grief journey.
Click here to register.

2026 BDSRA Annual Family Conference in Chicago, IL
2026-07-10 - 2026-07-12
We need your ideas!! If you haven’t already, mark your calendars for the 2026 Annual Family Conference for July 10-12 at the Westin Chicago Lombard! As you await further info, what do YOU think this year’s Conference theme should be?
Email your idea(s) to patrick@bdsrafoundation.org!
