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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:20260121T180000
DTEND;TZID=America/New_York:20260121T190000
DTSTAMP:20260427T130954
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:20251209T190000
DTEND;TZID=America/New_York:20251209T200000
DTSTAMP:20260427T130954
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:20260427T130954
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;TZID=America/New_York:20251015T180000
DTEND;TZID=America/New_York:20251015T190000
DTSTAMP:20260427T130954
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;TZID=America/New_York:20240409T170000
DTEND;TZID=America/New_York:20240409T180000
DTSTAMP:20260427T130954
CREATED:20240402T141215Z
LAST-MODIFIED:20240409T171905Z
UID:18547-1712682000-1712685600@bdsrafoundation.org
SUMMARY:Ask-An-Expert Webinar: Research in Review
DESCRIPTION:Ask-An-Expert returns on Tuesday\, April 9 from 5:00-6:00 p.m. EDT for a Research in Review edition. Hosted by BDSRA Foundation Head of Research & Medical Affairs\, Dr. Ineka Whiteman\, this webinar will feature presentations from: \n\nPaulo Falabella\, MD\, PhD\, Vice President\, Clinical Development & Operations\, REGENXBIO: Preliminary Clinical Data on CLN2 Gene Therapy RGX-181 & RGX-381 \nEwa Ziółkowska\, PhD\, Post Doctoral Researcher\, Pediatric Storage Disorders Lab\, Washington University in St. Louis: Gene Therapy Treats Neuromuscular Consequences in a CLN3 Mouse Model\nIneka Whiteman\, PhD\, Head of Research & Medical Affairs\, BDSRA U.S. & Australia: Clinical Research Updates\n\nIMPORTANT NOTE: Although webinars are typically recorded and posted to our YouTube channel afterward\, today’s webinar WILL NOT be recorded. So if you’re able to\, please register to attend the webinar. \nLearn more and register by clicking here.
URL:https://bdsrafoundation.org/event/ask-an-expert-webinar-research-in-review/
CATEGORIES:Ask-An-Expert
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231213T180000
DTEND;TZID=America/New_York:20231213T190000
DTSTAMP:20260427T130954
CREATED:20231202T033911Z
LAST-MODIFIED:20231202T033911Z
UID:18307-1702490400-1702494000@bdsrafoundation.org
SUMMARY:2023 Research in Review Webinar
DESCRIPTION:Mark your calendars for Wednesday\, Dec. 13 at 6 p.m. EST (Thursday\, Dec. 14\, 2023\, at 10 AM AEDT\, Sydney/Melbourne) for a 2023 Research in Review webinar hosted by Dr. Ineka Whiteman\, joined by Dr. David Pearce\, Dr. Jonathan Cooper\, Dr. Kourtney Santucci\, and Dr. Tony Cook. \nClick here to register for the event.
URL:https://bdsrafoundation.org/event/2023-research-in-review-webinar/
LOCATION:Zoom
CATEGORIES:Ask-An-Expert
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231130T180000
DTEND;TZID=America/New_York:20231130T190000
DTSTAMP:20260427T130954
CREATED:20231122T100037Z
LAST-MODIFIED:20231121T222508Z
UID:18264-1701367200-1701370800@bdsrafoundation.org
SUMMARY:REGENXBIO Webinar
DESCRIPTION:Have questions on the latest news concerning REGENXBIO and its halted gene therapy programs for CLN2 Batten disease? Join us for a webinar on Thursday\, November 30\, at 6 p.m. EST. \nThis webinar will be hosted by BDSRA Head of Research & Medical Affairs Dr. Ineka Whiteman\, who’ll be joined by BDSRA board members Dr. David Pearce and Dr. Fernanda Leal-Pardinas. Dr. Whiteman will provide the latest news on REGENXBIO’s Batten disease programs\, followed by a Q&A. \nThose who wish to attend MUST register. Register before the webinar’s start time on Nov. 30. \nClick here to register.
URL:https://bdsrafoundation.org/event/regenxbio-webinar/
LOCATION:Zoom
CATEGORIES:Ask-An-Expert
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220505T170000
DTEND;TZID=America/New_York:20220505T180000
DTSTAMP:20260427T130954
CREATED:20220422T193033Z
LAST-MODIFIED:20220426T194114Z
UID:13987-1651770000-1651773600@bdsrafoundation.org
SUMMARY:International Ask-An-Expert | Biotechs and NCL clinical research: Exploring the current landscape
DESCRIPTION:Join us for a special edition of BDSRA’s virtual Ask-An-Expert session on Thursday\, May 5th at 5 p.m. ET. \nThis session will feature a panel of Batten experts presenting: Biotechs and NCL clinical research: Exploring the current landscape. \nClick here to register!
URL:https://bdsrafoundation.org/event/international-ask-an-expert-exploring-the-current-landscape/
CATEGORIES:Ask-An-Expert
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220420T180000
DTEND;TZID=America/New_York:20220420T190000
DTSTAMP:20260427T130954
CREATED:20220330T172605Z
LAST-MODIFIED:20220330T172721Z
UID:13797-1650477600-1650481200@bdsrafoundation.org
SUMMARY:Ask-An-Expert: Courageous Parents Network Edition
DESCRIPTION:Join us for Ask-An-Expert: Courageous Parents Network Edition on April 20th at 6:00p ET. \nPlease join BDSRA and Courageous Parents Network as Lord Taylor Blyth; Founder and Executive Director\, CPN presents:\nWhen the Ground Shifts; Changes in Your Child’s Baseline and Anticipatory Grief 
URL:https://bdsrafoundation.org/event/13797/
CATEGORIES:Ask-An-Expert
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220118T180000
DTEND;TZID=America/New_York:20220118T190000
DTSTAMP:20260427T130954
CREATED:20220118T203002Z
LAST-MODIFIED:20220118T203002Z
UID:13644-1642528800-1642532400@bdsrafoundation.org
SUMMARY:Ask-An-Expert: Clinical Edition
DESCRIPTION:Ask-An-Expert: Clinical Edition | January 18th | 6p EST\nLearn about clinical updates and ask questions during this LIVE Q&A with Dr. Erika Augustine. Register here: https://web.charityengine.net/ClinicalEdition_Jan2022/
URL:https://bdsrafoundation.org/event/ask-an-expert-clinical-edition/
CATEGORIES:Ask-An-Expert
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
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