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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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DTSTART;TZID=America/New_York:20240605T200000
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DTSTAMP:20260424T163630
CREATED:20240516T160037Z
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UID:18831-1717617600-1717621200@bdsrafoundation.org
SUMMARY:Moderator Support Training
DESCRIPTION:On Wednesday\, June 5 at 8 p.m. EDT\, Dr. Joseph Vigil will lead virtual training via Zoom for anyone who wants to facilitate discussions in the breakout groups at the Annual Family Conference in July. The breakout groups at the conference will include bereaved fathers\, bereaved mothers\, grandparents\, and actively caring mothers and fathers by CLN type. \nPlease complete the form by clicking here and email support@bdsrafoundation.org for any questions and/or issues. Once you register\, you will receive the Zoom link to join the training via the success page and a confirmation email.
URL:https://bdsrafoundation.org/event/moderator-support-training/
LOCATION:Zoom
CATEGORIES:Peer Support Group Leader Training
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DTSTART;VALUE=DATE:20240609
DTEND;VALUE=DATE:20240610
DTSTAMP:20260424T163630
CREATED:20240506T193412Z
LAST-MODIFIED:20240506T194345Z
UID:18818-1717891200-1717977599@bdsrafoundation.org
SUMMARY:International Batten Disease Awareness Day
DESCRIPTION:  \nAbout this event: Join us as we celebrate Batten families around the world and raise awareness and funds! The BDSRA Foundation is hosting the 2024 International Batten Disease Awareness Day Virtual 5K on Sunday\, June 9th\, 2024. You don’t have to participate in the virtual 5K to advocate for Batten disease. This year\, we’re providing a variety of activities for you to raise awareness and funds for Batten disease and BDSRA\, including fundraising\, sending letters to your congressional representatives\, and more. \nClick here for more information.
URL:https://bdsrafoundation.org/event/international-batten-disease-awareness-day/
CATEGORIES:Advocacy Event
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DTSTART;TZID=America/New_York:20240618T183000
DTEND;TZID=America/New_York:20240618T193000
DTSTAMP:20260424T163630
CREATED:20240517T155048Z
LAST-MODIFIED:20240517T155048Z
UID:18855-1718735400-1718739000@bdsrafoundation.org
SUMMARY:First-Time Conference Attendee Orientation
DESCRIPTION:BDSRA will hold a First-Time Conference Attendee Orientation on Tuesday\, June 18\, at 6:30 p.m. EDT. This virtual event will be a casual forum for those attending the Annual Family Conference for the first time this July. Attendees will receive more information about the conference during this event and can ask questions. \nPlease click here to register\, and email support@bdsrafoundation.org for any questions and/or issues. Once you register\, you will receive the Zoom link to join the session via the success page and a confirmation email.
URL:https://bdsrafoundation.org/event/first-time-conference-attendee-orientation/
LOCATION:Zoom
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DTSTART;TZID=America/New_York:20240619T183000
DTEND;TZID=America/New_York:20240619T193000
DTSTAMP:20260424T163630
CREATED:20240517T154333Z
LAST-MODIFIED:20240517T154754Z
UID:18849-1718821800-1718825400@bdsrafoundation.org
SUMMARY:SIBs Warm-Up
DESCRIPTION:Before you reunite with your fellow SIBs in person at July’s Annual Family Conference in St. Louis\, catch up with them and meet new SIBs beforehand! Whether you’re new to the SIBs program or a longtime member\, we encourage you to attend the SIBs Warm-Up on Wednesday\, June 19\, at 6:30 p.m. EDT. \nPlease click here to register and email support@bdsrafoundation.org for any questions and/or issues. Once you register\, you will receive the Zoom link to join the Warm-Up via the success page and a confirmation email.
URL:https://bdsrafoundation.org/event/sibs-warm-up/
LOCATION:Zoom
CATEGORIES:SIBs
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