BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Batten Disease Support & Research Association - ECPv6.15.12.2//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Batten Disease Support & Research Association
X-ORIGINAL-URL:https://bdsrafoundation.org
X-WR-CALDESC:Events for Batten Disease Support & Research Association
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20260308T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20261101T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20270314T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20271107T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Los_Angeles
BEGIN:DAYLIGHT
TZOFFSETFROM:-0800
TZOFFSETTO:-0700
TZNAME:PDT
DTSTART:20250309T100000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0700
TZOFFSETTO:-0800
TZNAME:PST
DTSTART:20251102T090000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0800
TZOFFSETTO:-0700
TZNAME:PDT
DTSTART:20260308T100000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0700
TZOFFSETTO:-0800
TZNAME:PST
DTSTART:20261101T090000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0800
TZOFFSETTO:-0700
TZNAME:PDT
DTSTART:20270314T100000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0700
TZOFFSETTO:-0800
TZNAME:PST
DTSTART:20271107T090000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:America/Chicago
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20240310T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20241103T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20250309T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20251102T070000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20260308T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20261101T070000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260419T190000
DTEND;TZID=America/New_York:20260419T200000
DTSTAMP:20260421T003225
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260416T120000
DTEND;TZID=America/New_York:20260416T130000
DTSTAMP:20260421T003225
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260415T170000
DTEND;TZID=America/New_York:20260415T180000
DTSTAMP:20260421T003225
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260317
DTEND;VALUE=DATE:20260318
DTSTAMP:20260421T003225
CREATED:20260310T183345Z
LAST-MODIFIED:20260310T183345Z
UID:24581-1773705600-1773791999@bdsrafoundation.org
SUMMARY:No-Show St. Patrick's Day Dinner Fundraiser
DESCRIPTION:CLICK HERE TO LEARN MORE AND PARTICIPATE
URL:https://bdsrafoundation.org/event/no-show-st-patricks-day-dinner-fundraiser/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260227
DTEND;VALUE=DATE:20260228
DTSTAMP:20260421T003225
CREATED:20260127T222649Z
LAST-MODIFIED:20260127T222649Z
UID:24336-1772150400-1772236799@bdsrafoundation.org
SUMMARY:Panda Express Fundraiser
DESCRIPTION:CLICK HERE FOR DETAILS!
URL:https://bdsrafoundation.org/event/batten-disease-panda-express-fundraiser/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20260215T190000
DTEND;TZID=America/Los_Angeles:20260215T200000
DTSTAMP:20260421T003225
CREATED:20251003T194752Z
LAST-MODIFIED:20260205T190828Z
UID:23963-1771182000-1771185600@bdsrafoundation.org
SUMMARY:Board of Directors Town Hall (Pacific Time Slot)
DESCRIPTION:Virtual Town Halls with the BDSRA Foundation Board of Directors will be held quarterly. The dates for these Town Halls are: \n\nSunday\, November 9\, 2025\nSunday\, February 15\, 2026\nSunday\, May 10\, 2026\nSunday\, August 9\, 2026\n\nEach session will have two time slots; please choose one to attend. Those time slots are 7 PM EST and 7 PM PST.  \nQuestion Submission\n \nA live Q&A will be featured in these Town Halls. If you’re unable to attend either Town Hall session or prefer not to ask your question during the live sessions\, you may submit a question anonymously by emailing your question(s) to bdsramarketing@gmail.com.\n \nPlease include “Town Hall Question” in the subject line. These submitted questions may be answered during the live sessions. Not all submitted questions may be answered due to time and appropriateness. \nClick here to learn more. 
URL:https://bdsrafoundation.org/event/board-of-directors-town-hall-2/
LOCATION:Zoom
CATEGORIES:Board Meeting
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260215T190000
DTEND;TZID=America/New_York:20260215T200000
DTSTAMP:20260421T003225
CREATED:20251003T194448Z
LAST-MODIFIED:20260205T190905Z
UID:23960-1771182000-1771185600@bdsrafoundation.org
SUMMARY:Board of Directors Town Hall (Eastern Time Slot)
DESCRIPTION:Virtual Town Halls with the BDSRA Foundation Board of Directors will be held quarterly. The dates for these Town Halls are: \n\nSunday\, November 9\, 2025\nSunday\, February 15\, 2026\nSunday\, May 10\, 2026\nSunday\, August 9\, 2026\n\nEach session will have two time slots; please choose one to attend. Those time slots are 7 PM EST and 7 PM PST.  \nQuestion Submission\n \nA live Q&A will be featured in these Town Halls. If you’re unable to attend either Town Hall session or prefer not to ask your question during the live sessions\, you may submit a question anonymously by emailing your question(s) to bdsramarketing@gmail.com.\n \nPlease include “Town Hall Question” in the subject line. These submitted questions may be answered during the live sessions. Not all submitted questions may be answered due to time and appropriateness. \nClick here to learn more. 
URL:https://bdsrafoundation.org/event/board-of-directors-town-hall/
LOCATION:Zoom
CATEGORIES:Board Meeting
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260121T180000
DTEND;TZID=America/New_York:20260121T190000
DTSTAMP:20260421T003225
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260121T100000
DTEND;TZID=America/New_York:20260121T110000
DTSTAMP:20260421T003225
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260116T120000
DTEND;TZID=America/New_York:20260116T130000
DTSTAMP:20260421T003225
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251209T190000
DTEND;TZID=America/New_York:20251209T200000
DTSTAMP:20260421T003225
CREATED:20251027T190251Z
LAST-MODIFIED:20251118T212209Z
UID:23982-1765306800-1765310400@bdsrafoundation.org
SUMMARY:Ask-An-Expert: NCL Congress and BDSRA Australia Conference Updates (RESCHEDULED)
DESCRIPTION:UPDATE (11/18/2025): This event has been rescheduled for Tuesday\, December 9\, at 7 PM EST. If you’ve already registered\, the Zoom link you’ve received in your registration confirmation email and email reminders is still the correct link to join the session. \n \nLet’s dive into some research and clinical updates! \nAfter attending the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL) and BDSRA Australia’s Family Conference\, BDSRA Head of Research & Medical Affairs\, Ineka Whiteman\, PhD\, and Jonathan Cooper\, PhD\, of Washington University in St. Louis\, will recap the events\, share updates\, and answer your questions.  \nClick here to learn more and register. 
URL:https://bdsrafoundation.org/event/ask-an-expert-ncl-congress-and-bdsra-australia-conference-updates/
LOCATION:Zoom
CATEGORIES:Ask-An-Expert
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251201T200000
DTEND;TZID=America/New_York:20251201T210000
DTSTAMP:20260421T003225
CREATED:20251113T205426Z
LAST-MODIFIED:20251201T135457Z
UID:24034-1764619200-1764622800@bdsrafoundation.org
SUMMARY:Ask-An-Expert: Navigating Joy and Sadness During the Holidays (TIME CHANGE)
DESCRIPTION:TIME CHANGE: This session will now begin at 8:00 PM EST on Monday\, December 1. \n \nWho’s Invited: Families caring for children with Batten disease and bereaved families \nJoin Jamie Freedlund for a gentle conversation about finding balance between joy and sadness during the holiday season. Together\, we’ll explore ways to honor emotions\, adjust traditions\, and embrace connection in whatever form the holidays take. You will receive the Zoom link to join this session via email\, along with reminders for the event\, after you register. \nClick here to learn more and register. 
URL:https://bdsrafoundation.org/event/batten-disease-expert-navigating-joy/
LOCATION:Zoom
CATEGORIES:Ask-An-Expert
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251028
DTEND;VALUE=DATE:20251102
DTSTAMP:20260421T003225
CREATED:20250327T185428Z
LAST-MODIFIED:20250522T130851Z
UID:20924-1761609600-1762041599@bdsrafoundation.org
SUMMARY:NCL 2025 in Australia
DESCRIPTION:  \n \n\n \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n \n\n\n\n\n\n\n\n\n\n\n\n\n\nOn behalf of the NCL2025 Organizing Committee\, BDSRA Australia is thrilled to be hosting the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL) in the stunning surrounds of the Sunshine Coast\, Queensland\, Australia. As the premier conference on Batten disease\, the bi-annual NCL Congress brings together world-leading researchers\, healthcare providers\, industry partners\, innovators and patient advocacy leaders from around the globe. \nBDSRA Australia looks forward to welcoming you to the Sunshine Coast in October 2025 for what promises to be a truly memorable event. \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nStephanie Hughes \nChair \nNCL 2025 International Congress \n\n\n\n\n\n\n\n\n\n\n\n\nIneka Whiteman \nChair \nNCL 2025 International Congress &\nBDSRA Australia Family Conference 2025 \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nAbstract Submissions are now open for the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL). \nSubmit your abstract to play an important role in NCL 2025! \n\n\n\n\n\n\n\n\n\n \nREGISTER HERE\n \n\n\n\n\n\n\n\n\n\n\n\n\n\n \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nAbstract Submissions are now open for the 19th International Congress on Neuronal Ceroid Lipofuscinosis (NCL). \nSubmit your abstract to play an important role in NCL 2025! \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n \nSUBMIT YOUR ABSTRACT HERE\n \n\n\n\n\n\n\n\n\n\n\n\n\n\n \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nNCL 2025 is has secured discounted rates for the Congress and bookings can be made via Groups 360\, which is external to the registration system. This booking process will provide delegates with greater flexibility to add extra nights\, breakfast offerings as well as including any hotel loyalty programs. \nBOOKINGS WILL CLOSE ON WEDNESDAY\, JULY 30\, 2025 \n\n\n\n\n\n\n\n\n\n \nVIEW THE INSTRUCTIONS VIA THE WEBSITE\n \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nThere is a range of sponsorship and exhibition opportunities available at NCL 2025. To receive a copy of the 2025 Sponsorship Prospectus\, or for any sponsorship enquiries\, please contact: \nTravis Clarke  travis.c@asnevents.net.au \n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n 
URL:https://bdsrafoundation.org/event/ncl-2025-in-australia/
CATEGORIES:Research
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251015T180000
DTEND;TZID=America/New_York:20251015T190000
DTSTAMP:20260421T003225
CREATED:20250926T205504Z
LAST-MODIFIED:20250926T210052Z
UID:23927-1760551200-1760554800@bdsrafoundation.org
SUMMARY:Ask-An-Expert: Understanding ABLE Saving Plans
DESCRIPTION:ASK-AN-EXPERT RETURNS! \nMark your calendars for Wednesday\, October 15\, at 6 PM EDT\, for the next virtual Ask-An-Expert\, featuring Stacy Pfeifer\, Director of Enable Savings Plan. Stacy has been with the Nebraska State Treasurer’s Office for 13 years and the Director of Enable for 3 ½ years. Stacy educates individuals about Enable accounts through presentations and resource fairs. \nClick here to learn more about Stacy and register. 
URL:https://bdsrafoundation.org/event/ask-an-expert-understanding-able-saving-plans/
LOCATION:Zoom
CATEGORIES:Ask-An-Expert
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250831
DTEND;VALUE=DATE:20250901
DTSTAMP:20260421T003225
CREATED:20250805T192606Z
LAST-MODIFIED:20250805T193002Z
UID:23720-1756598400-1756684799@bdsrafoundation.org
SUMMARY:Board of Directors Application Deadline
DESCRIPTION:Our Board of Directors makes a difference for the Batten community. Are you ready to make an impact?  \nApply to join the Board of Directors by August 31! Visit the application to see the full description and qualifications. \nCLICK HERE TO VIEW THE APPLICATION. 
URL:https://bdsrafoundation.org/event/board-of-directors-application-deadline/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250711
DTEND;VALUE=DATE:20250714
DTSTAMP:20260421T003225
CREATED:20250410T195742Z
LAST-MODIFIED:20250410T195742Z
UID:21201-1752192000-1752451199@bdsrafoundation.org
SUMMARY:2025 BDSRA Annual Family Conference
DESCRIPTION:CLICK BELOW FOR ALL INFORMATION ON THE 2025 BDSRA ANNUAL FAMILY CONFERENCE IN LINCOLN\, NEBRASKA! \nCLICK HERE.
URL:https://bdsrafoundation.org/event/2025-bdsra-annual-family-conference/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250617T193000
DTEND;TZID=America/New_York:20250617T203000
DTSTAMP:20260421T003225
CREATED:20250516T131532Z
LAST-MODIFIED:20250516T131532Z
UID:21384-1750188600-1750192200@bdsrafoundation.org
SUMMARY:Newly Diagnosed & First-Time Conference Attendee Orientation
DESCRIPTION:BDSRA will hold a Newly Diagnosed & First-Time Conference Attendee Orientation on Tuesday\, June 17\, at 7:30 PM EDT. \nThis virtual event will be a casual forum for conversation with families who have recently received a Batten disease diagnosis as well as those who are interested in attending the Annual Family Conference this July. Attendees will receive more information about BDSRA\, the disease\, helpful resources\, the conference\, and more during this event. \nClick here to register for this virtual event.
URL:https://bdsrafoundation.org/event/newly-diagnosed-first-time-conference-attendee-orientation/
LOCATION:Zoom
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250609
DTEND;VALUE=DATE:20250610
DTSTAMP:20260421T003225
CREATED:20250418T154302Z
LAST-MODIFIED:20250418T154302Z
UID:21291-1749427200-1749513599@bdsrafoundation.org
SUMMARY:2025 International Batten Disease Awareness Day & Virtual 5K
DESCRIPTION:CLICK BELOW FOR ALL INFORMATION ON INTERNATIONAL BATTEN DISEASE AWARENESS DAY AND THE VIRTUAL 5K! \nCLICK HERE.
URL:https://bdsrafoundation.org/event/2025-international-batten-disease-awareness-day-virtual-5k/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250330
DTEND;VALUE=DATE:20250331
DTSTAMP:20260421T003225
CREATED:20250321T203938Z
LAST-MODIFIED:20250321T204021Z
UID:20915-1743292800-1743379199@bdsrafoundation.org
SUMMARY:DEADLINE: International Batten Disease Awareness Day T-Shirt Design Contest
DESCRIPTION:T-Shirt Contest: IT’S BACK AGAIN! For the third straight year\, we are holding another T-shirt contest to determine the design of this year’s International Batten Disease Awareness Day T-shirt! Previous winners include: \n2024: Kennedy Reed\n2023: Kris Bonagofsky \nDEADLINE: Design Submissions will be accepted through 11:59 p.m. EDT on Sunday\, March 30th. Submissions are limited to one per person. \n\nBDSRA will narrow submissions down to three finalists in early April. Once there are three finalists\, the community will vote on the winner\, which will be unveiled later in April. \nPlease find the design guidelines\, instructions\, and deadline for this year’s contest by clicking here.
URL:https://bdsrafoundation.org/event/deadline-international-batten-disease-awareness-day-t-shirt-design-contest/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250301T130000
DTEND;TZID=America/New_York:20250301T140000
DTSTAMP:20260421T003225
CREATED:20250214T214813Z
LAST-MODIFIED:20250214T214813Z
UID:20777-1740834000-1740837600@bdsrafoundation.org
SUMMARY:SIBs Mid-Season Social
DESCRIPTION:The SIBs Mid-Season Social on Saturday\, March 1\, 2025\, is open to BATTEN SIBLINGS ONLY. Batten siblings of all ages are welcome\, including those who haven’t participated in the SIBs program before. This event is an opportunity for SIBs to reconnect with fellow Batten SIBs and for those new to the program to introduce themselves. A Zoom link to join the event will be available in your confirmation email after you register. \nClick here for more registration details.
URL:https://bdsrafoundation.org/event/sibs-mid-season-social-2/
LOCATION:Zoom
CATEGORIES:SIBs
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250224
DTEND;VALUE=DATE:20250227
DTSTAMP:20260421T003225
CREATED:20250116T232917Z
LAST-MODIFIED:20250221T214158Z
UID:20670-1740355200-1740614399@bdsrafoundation.org
SUMMARY:Rare Disease Week on Capitol Hill
DESCRIPTION:UPDATE: FDA-NIH Rare Disease Day has been postponed. \nClick here for Rare Disease Week on Capitol Hill information.
URL:https://bdsrafoundation.org/event/rare-disease-week-on-capitol-hill-fda-nih-rare-disease-day/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250211T183000
DTEND;TZID=America/New_York:20250211T193000
DTSTAMP:20260421T003225
CREATED:20250121T182125Z
LAST-MODIFIED:20250204T163215Z
UID:20679-1739298600-1739302200@bdsrafoundation.org
SUMMARY:Valentine's Day Party
DESCRIPTION:Love is in the air\, and so is fun! The BDSRA Foundation is excited to invite Batten families to a Valentine’s Day party via Zoom on Tuesday\, February 11\, at 6:30 PM EST. It’s a special chance for parents\, siblings\, and their loved one(s) with Batten to come together for a night of joy\, creativity\, and community. \n💐 What’s in store? \n\nA story to enjoy together\nA fun craft activity to spark creativity (don’t worry\, we’ve got the supplies covered!)\n\nParty hits have SOLD OUT. You may still register and join the party if you didn’t reserve a party kit! \nOnce you’ve registered\, we’ll email you the Zoom link to join the fun. So grab your family\, and let’s make this virtual party one to remember! 💌 \nClick here to register.
URL:https://bdsrafoundation.org/event/valentines-day-party-2/
LOCATION:Zoom
CATEGORIES:Holidays,SIBs
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250201T083000
DTEND;TZID=America/Chicago:20250201T170000
DTSTAMP:20260421T003225
CREATED:20240126T200616Z
LAST-MODIFIED:20250123T164228Z
UID:18361-1738398600-1738429200@bdsrafoundation.org
SUMMARY:Board of Directors Quarterly Meeting
DESCRIPTION:BDSRA’s Board of Directors will have its quarterly meeting in person on Saturday\, February 1\, 2025\, from 8:30 AM to 5 PM CST in Chicago. 
URL:https://bdsrafoundation.org/event/bdsra-board-of-directors-quarterly-meeting/
LOCATION:Zoom
CATEGORIES:Board Meeting
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250128T123000
DTEND;TZID=America/New_York:20250128T133000
DTSTAMP:20260421T003225
CREATED:20250121T222019Z
LAST-MODIFIED:20250121T222911Z
UID:20685-1738067400-1738071000@bdsrafoundation.org
SUMMARY:Fam Funds Informational Zoom Meeting
DESCRIPTION:FAM FUNDS IS BACK! \n\n\n\nBatten families now have the opportunity to help raise funds for the BDSRA Foundation and awareness for Batten disease through their own fundraisers! Learn more about Fam Funds by attending this information session. \nClick here to register.
URL:https://bdsrafoundation.org/event/fam-funds-informational-zoom-meeting/
LOCATION:Zoom
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241104
DTEND;VALUE=DATE:20250102
DTSTAMP:20260421T003225
CREATED:20241024T180041Z
LAST-MODIFIED:20241024T180152Z
UID:20386-1730678400-1735775999@bdsrafoundation.org
SUMMARY:2024 Annual Appeal
DESCRIPTION:Beginning on November 4\, the BDSRA Foundation will open its Annual Appeal Giving campaign. Stay tuned for information on how you can help Batten families and ways to give. \nWatch our Facebook and Instagram for updates\, and click here to sign up for our email list.
URL:https://bdsrafoundation.org/event/2024-annual-appeal/
CATEGORIES:Seasonal Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241013T160000
DTEND;TZID=America/New_York:20241013T170000
DTSTAMP:20260421T003225
CREATED:20240823T153909Z
LAST-MODIFIED:20241008T194029Z
UID:20253-1728835200-1728838800@bdsrafoundation.org
SUMMARY:Boo Bash 2024
DESCRIPTION:CLICK HERE TO REGISTER \nWho’s ready for a scary good time? \nGrab your costumes and join us for a frightfully FUN time as BDSRA hosts its Annual Boo Bash for Batten families on Sunday\, October 13\, at 4 PM EDT via Zoom. This virtual party allows parents and SIBs to gather with their loved one(s) with Batten and enjoy a Halloween party with fellow Batten families and the BDSRA staff! \nThe deadline to order party kits has passed\, but you may still register to attend the party and join the fun. \nA Zoom link will be sent to the email address you use to register\, along with instructions to join in the SPOOK-tacular fun. Families are welcome to request a kit for each child participating!
URL:https://bdsrafoundation.org/event/boo-bash-2024/
LOCATION:Zoom
CATEGORIES:Holidays,Seasonal Events,SIBs
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240811T160000
DTEND;TZID=America/New_York:20240811T170000
DTSTAMP:20260421T003225
CREATED:20240718T213714Z
LAST-MODIFIED:20240718T213714Z
UID:20122-1723392000-1723395600@bdsrafoundation.org
SUMMARY:2nd Annual Dog Days of Summer Virtual Party
DESCRIPTION:The summer days are hot\, but hanging out with your BDSRA pack is so cool! Join us for a howling good time during the 2nd Annual Dog Days of Summer Virtual Party! \nThis virtual party will take place via Zoom on Sunday\, August 11\, at 4 PM EDT. This party is an opportunity for Batten SIBs and parents to celebrate summer alongside their affected loved one(s) with a story and craft activity. If you have any dogs\, they can join you too! FREE party kits are available for families to order during registration until 11:59 PM EDT on Sunday\, July 28\, while supplies last. Party kits are reserved for U.S. and Canadian families only. You may still register to attend the party after that date. \nA Zoom link will be sent to the email address you use to register\, along with instructions on how to join in the fun. Families are welcome to request a kit for each child who will be participating! \nLet’s get ready for a party you won’t fur-get!
URL:https://bdsrafoundation.org/event/2nd-annual-dog-days-of-summer-virtual-party/
LOCATION:Zoom
CATEGORIES:Seasonal Events,SIBs
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240712
DTEND;VALUE=DATE:20240715
DTSTAMP:20260421T003225
CREATED:20240506T194211Z
LAST-MODIFIED:20240506T194211Z
UID:18820-1720742400-1721001599@bdsrafoundation.org
SUMMARY:Annual Family Conference in St. Louis
DESCRIPTION:Click here to visit the main conference page on our website\, which inckudes information on registration\, hotel & travel\, the conference agenda\, and more!
URL:https://bdsrafoundation.org/event/annual-family-conference-in-st-louis/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240619T183000
DTEND;TZID=America/New_York:20240619T193000
DTSTAMP:20260421T003225
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240618T183000
DTEND;TZID=America/New_York:20240618T193000
DTSTAMP:20260421T003225
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
END:VEVENT
END:VCALENDAR