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X-ORIGINAL-URL:https://bdsrafoundation.org
X-WR-CALDESC:Events for Batten Disease Support & Research Association
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DTSTART;TZID=America/New_York:20260116T120000
DTEND;TZID=America/New_York:20260116T130000
DTSTAMP:20260421T004914
CREATED:20250212T163027Z
LAST-MODIFIED:20251229T173542Z
UID:20761-1768564800-1768568400@bdsrafoundation.org
SUMMARY:Coffee Chat
DESCRIPTION: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.  \nSession Details: A space to pause\, breathe\, and reflect on the small lights that carry us through the winter months—connection\, hope\, and one another. \nNOTE: 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.  \nClick here to register.
URL:https://bdsrafoundation.org/event/coffee-chat-2/
LOCATION:Zoom
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DTSTART;TZID=America/New_York:20260121T100000
DTEND;TZID=America/New_York:20260121T110000
DTSTAMP:20260421T004914
CREATED:20260102T191351Z
LAST-MODIFIED:20260102T191351Z
UID:24279-1768989600-1768993200@bdsrafoundation.org
SUMMARY:CLN7 Community Update
DESCRIPTION: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. \nDuring the session\, Elpida will share: \n\nThe latest on a new gene therapy clinical trial\nTimelines for the trial and next steps\nHow patients are being selected for participation\n\nJoin 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. \nZOOM SESSION DETAILS: \nTopic: CLN7 Community Meeting \nTime: January 21\, 2026 09:00 AM Central Time (US and Canada) \nJoin Zoom Meeting\nhttps://us02web.zoom.us/j/9890666291?omn=81458092431 \nMeeting ID: 989 066 6291 \n— \nOne tap mobile\n+17879667727\,\,9890666291# Puerto Rico\n+19399450244\,\,9890666291# Puerto Rico \nJoin instructions\nhttps://us02web.zoom.us/meetings/81458092431/invitations?signature=25AUZyyuTGo6oR-JWkq1jgEQ45RY04SHzCBew3Ui90M
URL:https://bdsrafoundation.org/event/cln7-community-update/
LOCATION:Zoom
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DTSTART;TZID=America/New_York:20260121T180000
DTEND;TZID=America/New_York:20260121T190000
DTSTAMP:20260421T004914
CREATED:20260108T191847Z
LAST-MODIFIED:20260114T205623Z
UID:24300-1769018400-1769022000@bdsrafoundation.org
SUMMARY:Ask-An-Expert: Fundraising & Fam Funds 101
DESCRIPTION: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. \nPlease complete the registration form by clicking here to receive the Zoom link to join this session! \nVisit our Fam Funds page here. 
URL:https://bdsrafoundation.org/event/batten-disease-expert-fundraising-101/
LOCATION:Zoom
CATEGORIES:Ask-An-Expert
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