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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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UID:15487-1662663600-1662667200@bdsrafoundation.org
SUMMARY:BDSRA Quarterly Grief Chat
DESCRIPTION:The BDSRA Foundation will host its next Quarterly Grief Chat on Thursday\, September 8th at 7:00 p.m. EST. This is an opportunity for loved ones to gather\, share and support one another. BDSRA understands that each stage of this journey is different\, and we are here for you. \nRegister to attend by visiting this link: https://web.charityengine.net/Default.aspx?tsid=22540 \nJoin the event with the zoom link that will be sent via email following registration.
URL:https://bdsrafoundation.org/event/bdsra-quarterly-grief-chat/
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BEGIN:VEVENT
DTSTART;TZID=America/Denver:20220917T090000
DTEND;TZID=America/Denver:20220917T120000
DTSTAMP:20260522T055217
CREATED:20220909T191616Z
LAST-MODIFIED:20220909T192245Z
UID:15548-1663405200-1663416000@bdsrafoundation.org
SUMMARY:Bike For Batten 2022 (Nampa\, ID)
DESCRIPTION:Registration for the 2nd Annual Bike for Batten fundraiser is open! \nThis fundraiser\, organized by Bekah Murphy\, a CLN2 Batten aunt\, features bike rides in Nampa\, Idaho on Saturday\, September 17th and Colville\, Washington on Saturday\, September 24th. \nClick here to read Bekah’s story and register!
URL:https://bdsrafoundation.org/event/bike-for-batten-2022/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220918T190000
DTEND;TZID=UTC:20220918T200000
DTSTAMP:20260522T055217
CREATED:20220909T185318Z
LAST-MODIFIED:20220912T154101Z
UID:15545-1663527600-1663531200@bdsrafoundation.org
SUMMARY:Advocacy Committee Meeting
DESCRIPTION:Our Advocacy Committee invites you to discuss local and federal advocacy efforts\, Newborn Screening\, Rare Disease Week\, how to share your story\, and more! \nVirtual meetings will be held on the third Sunday of each odd month at 7 p.m. ET. The first meeting will be held on Sunday\, September 18th! \nPlease email info@bdsrafoundation.org to get started!
URL:https://bdsrafoundation.org/event/advocacy-committee-meeting/
CATEGORIES:Advocacy Event
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BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20220924T090000
DTEND;TZID=America/Los_Angeles:20220924T113000
DTSTAMP:20260522T055217
CREATED:20220909T192401Z
LAST-MODIFIED:20220912T153854Z
UID:15552-1664010000-1664019000@bdsrafoundation.org
SUMMARY:Bike For Batten 2022 (Colville\, WA)
DESCRIPTION:Registration for the 2nd Annual Bike for Batten fundraiser is open! \nThis fundraiser\, organized by Bekah Murphy\, a CLN2 Batten aunt\, features bike rides in Nampa\, Idaho on Saturday\, September 17th and Colville\, Washington on Saturday\, September 24th. \nClick here to read Bekah’s story and register!
URL:https://bdsrafoundation.org/event/bike-for-batten-2022-colville-wa/
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