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
—
One tap mobile
+17879667727,,9890666291# Puerto Rico
+19399450244,,9890666291# Puerto Rico
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

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 Virtual Grief 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!

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
2026-03-20 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 March 20: Some days feel heavier than others. Join us as we share simple tools, honest experiences, and support to help navigate the hard moments together.
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.

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!
