Batten Disease Support & Research Association

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!
