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X-WR-CALNAME:Batten Disease Support & Research Association
X-ORIGINAL-URL:https://bdsrafoundation.org
X-WR-CALDESC:Events for Batten Disease Support & Research Association
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260415T170000
DTEND;TZID=America/New_York:20260415T180000
DTSTAMP:20260421T003205
CREATED:20260227T185442Z
LAST-MODIFIED:20260326T154826Z
UID:24463-1776272400-1776276000@bdsrafoundation.org
SUMMARY:Conference Volunteer Meeting
DESCRIPTION:Annual Family Conference Volunteer Info\n1. Get all the details here. \n2. Email Heather@bdsrafoundation.org and indicate which committee they would like to join. \n3. Sign up for the Volunteer Email List\, click here. \nMeetings 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: \n\nWednesday\, March 18\nWednesday\, April 15\nWednesday\, May 20\nWednesday\, June 17
URL:https://bdsrafoundation.org/event/conference-volunteer-meeting/
LOCATION:Zoom
CATEGORIES:Annual Family Conference
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DTSTART;TZID=America/New_York:20260416T120000
DTEND;TZID=America/New_York:20260416T130000
DTSTAMP:20260421T003205
CREATED:20250212T162624Z
LAST-MODIFIED:20260324T192950Z
UID:20758-1776340800-1776344400@bdsrafoundation.org
SUMMARY:Monthly 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 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. \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/
LOCATION:Zoom
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DTSTART;TZID=America/New_York:20260419T190000
DTEND;TZID=America/New_York:20260419T200000
DTSTAMP:20260421T003205
CREATED:20240130T210337Z
LAST-MODIFIED:20260325T143909Z
UID:18369-1776625200-1776628800@bdsrafoundation.org
SUMMARY:Grief Chat
DESCRIPTION:The next scheduled chat is Sunday\, April 19\, 2026\, at 7 PM EDT. \nSession 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. \nREGISTERING: 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. \nAbout 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. \nClick here to register.
URL:https://bdsrafoundation.org/event/grief-chat/
LOCATION:Zoom
CATEGORIES:Grief Chat
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260517
DTEND;VALUE=DATE:20260518
DTSTAMP:20260421T003205
CREATED:20260401T193923Z
LAST-MODIFIED:20260401T193923Z
UID:24632-1778976000-1779062399@bdsrafoundation.org
SUMMARY:Conference Grants Deadline
DESCRIPTION:CLICK HERE TO LEARN MORE AND APPLY.
URL:https://bdsrafoundation.org/event/2026-batten-disease-conference-grants/
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260710
DTEND;VALUE=DATE:20260713
DTSTAMP:20260421T003205
CREATED:20260107T192241Z
LAST-MODIFIED:20260408T193839Z
UID:24289-1783641600-1783900799@bdsrafoundation.org
SUMMARY:2026 BDSRA Annual Family Conference in Chicago\, IL
DESCRIPTION:  \nCLICK HERE TO VISIT THE MAIN 2026 CONFERENCE PAGE
URL:https://bdsrafoundation.org/event/2026-bdsra-annual-family-conference-in-chicago-il/
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