Batten Disease Support & Research Association

Coffee Chat
2026-02-13 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 Feb. 13: This is a low-pressure space to connect, reflect on the start of a new year, and talk about what care looks like right now, for ourselves and our families. Come to share, listen, or simply be present. There’s no expectation to speak. So join us for a relaxed, supportive virtual coffee session for parents in the Batten disease community—both those caring for a child and those whose child has passed. You are welcome exactly as you are.
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.

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

Grief Chat
2026-02-22 19:00 - 20:00 (America/New_York) | Zoom
The next scheduled chat is Sunday, February 22, 2026, at 7 PM EST.
Session details for Feb. 22: When Grief Feels Lonely – Grief can feel isolating, even when others care deeply. This Good Grief virtual chat is a supportive space for bereaved parents to come together, share, and connect with others who truly understand life after loss. There is no pressure to speak or to have the right words. You are welcome to listen, reflect, and simply be in the community. You don’t have to carry your grief alone.
REGISTERING: You only need to complete the registration form below 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.
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.

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

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!
