Batten Disease Support & Research Association

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 | 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.

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!
