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X-WR-CALNAME:Batten Disease Support & Research Association
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X-WR-CALDESC:Events for Batten Disease Support & Research Association
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DTSTART:20251102T060000
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BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250201T083000
DTEND;TZID=America/Chicago:20250201T170000
DTSTAMP:20260421T151604
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:20260421T151604
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:20260421T151604
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:20260421T151604
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:20260421T151604
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:20260421T151604
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:20260421T151604
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:20260421T151604
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240609
DTEND;VALUE=DATE:20240610
DTSTAMP:20260421T151604
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240605T200000
DTEND;TZID=America/New_York:20240605T210000
DTSTAMP:20260421T151604
CREATED:20240516T160037Z
LAST-MODIFIED:20240517T155153Z
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240409T170000
DTEND;TZID=America/New_York:20240409T180000
DTSTAMP:20260421T151604
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:20240301T090000
DTEND;TZID=America/New_York:20240301T163000
DTSTAMP:20260421T151604
CREATED:20240118T151308Z
LAST-MODIFIED:20240118T152255Z
UID:18348-1709283600-1709310600@bdsrafoundation.org
SUMMARY:Rare Disease Day at FDA
DESCRIPTION:For complete information on this event\, including registration\, click here. \n“FDA will host Rare Disease Day\, a virtual public meeting\, on March 1\, 2024 in global observance of Rare Disease Week. This year’s Rare Disease Day is dedicated to patients and health care professionals. Panels will discuss: \n\nThe legal framework for approving studies and medical products at FDA\nWhat FDA does during review processes to approve medical products\nDecentralized clinical trials and digital health technologies\nWhere to find important information and documents related to clinical trials\nInformation that can be obtained from medical product labels\nLegal and ethical requirements for consent forms in clinical trials\nFDA initiatives to advance medical product development for rare diseases\nWays for patients to engage with FDA.”
URL:https://bdsrafoundation.org/event/rare-disease-day-at-fda/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240229T090000
DTEND;TZID=America/New_York:20240229T170000
DTSTAMP:20260421T151604
CREATED:20240118T145747Z
LAST-MODIFIED:20240118T152045Z
UID:18346-1709197200-1709226000@bdsrafoundation.org
SUMMARY:Rare Disease Day at NIH
DESCRIPTION:For complete information on this event\, including registration\, click here. \n“Rare Disease Day at NIH will be held at NIH Main Campus (Natcher Conference Center) on Thursday\, Feb. 29\, 2024\, from 9 a.m. to 5 p.m. EST. There also will be a virtual livestream via NIH VideoCast with the event archived for replay afterward. The event agenda will feature panel discussions\, rare diseases stories\, in-person exhibitors and scientific posters\, and an art exhibition. The event is free and open to the public.”
URL:https://bdsrafoundation.org/event/rare-disease-day-at-nih/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240225
DTEND;VALUE=DATE:20240229
DTSTAMP:20260421T151604
CREATED:20240113T010456Z
LAST-MODIFIED:20240118T152132Z
UID:18340-1708819200-1709164799@bdsrafoundation.org
SUMMARY:Rare Disease Week on Capitol Hill
DESCRIPTION:For complete information on this event\, including registration\, please visit the EveryLife Foundation for Rare Diseases website. \n“Rare Disease Week on Capitol Hill empowers and inspires hundreds of advocates each year. The connections you make during the week will impact rare disease patients for generations to come. \nHosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases)\, this multi-day event brings together rare disease advocates from across the country to make their voices heard by their Members of Congress. Participants are educated on policy proposals impacting the rare disease community and provided opportunities to advocate for policy changes directly to their Members of Congress. No matter one’s connection to rare disease or their advocacy experience level\, all are welcome.”
URL:https://bdsrafoundation.org/event/rare-disease-week-on-capitol-hill/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240214T183000
DTEND;TZID=America/New_York:20240214T193000
DTSTAMP:20260421T151604
CREATED:20240124T110005Z
LAST-MODIFIED:20240209T171255Z
UID:18356-1707935400-1707939000@bdsrafoundation.org
SUMMARY:Valentine's Day Party
DESCRIPTION:LOVE IS IN THE AIR! It’s time to mark your calendars for the first BDSRA holiday party of 2024! \nBDSRA will be hosting a virtual Valentine’s Day party on Wednesday\, February 14\, at 6:30 p.m. EST. This is a time for Batten SIBs\, parents\, and affected family members to gather for a fun evening celebrating Valentine’s Day with a party kit that includes a story and craft! \nThe deadline to order party kits has passed\, but you may still attend the party by registering. You will receive the Zoom link to join the party after registering. \nClick here to register!
URL:https://bdsrafoundation.org/event/valentines-day-party/
CATEGORIES:Holidays,SIBs
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240120T160000
DTEND;TZID=America/New_York:20240120T170000
DTSTAMP:20260421T151604
CREATED:20240113T011420Z
LAST-MODIFIED:20240113T011420Z
UID:18343-1705766400-1705770000@bdsrafoundation.org
SUMMARY:SIBs Mid-Season Social
DESCRIPTION:CALLING ALL BATTEN SIBS! \nThe time has come to re-connect with your fellow Batten SIBs and meet new ones at the SIBs Mid-Season Social! This event will take place on Saturday\, January 20\, at 4 p.m. EST on Zoom. Register to attend the event by clicking the link below. \nFor any questions about the event\, please email SIBs leader Jeni Montavon at jnmntvn@gmail.com. \nIf you have issues and/or questions related to registration for the event\, please email support@bdsrafoundation.org. \nCLICK HERE TO REGISTER
URL:https://bdsrafoundation.org/event/sibs-mid-season-social/
CATEGORIES:SIBs
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240118T150000
DTEND;TZID=America/New_York:20240118T160000
DTSTAMP:20260421T151604
CREATED:20240104T172002Z
LAST-MODIFIED:20240118T151902Z
UID:18326-1705590000-1705593600@bdsrafoundation.org
SUMMARY:CLN7 Batten Disease Research Update
DESCRIPTION:Elpida Therapeutics will host an open virtual meeting via Zoom on Thursday\, January 18\, from 3-4 p.m. EST\, to provide an update on the ongoing gene therapy trial for treating CLN7 Batten disease\, which has been led by the University of Texas Southwestern Medical Center. \nThey will discuss their plans to expand the treatment to more patients in the future\, and how our patient community can help move this program forward. Please note that this meeting is primarily for families affected by CLN7 disease but is open to all Batten families\, researchers\, clinicians\, patient advocacy groups\, etc. who wish to attend. \nJoin the Zoom meeting by clicking the link below. \nLink: https://us02web.zoom.us/j/9890666291?omn=87196549060 \nMeeting ID: 989 066 6291
URL:https://bdsrafoundation.org/event/cln7-batten-disease-research-update/
LOCATION:Zoom
CATEGORIES:Research
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240115
DTEND;VALUE=DATE:20240116
DTSTAMP:20260421T151604
CREATED:20240111T221016Z
LAST-MODIFIED:20240111T221016Z
UID:18332-1705276800-1705363199@bdsrafoundation.org
SUMMARY:Martin Luther King Jr. Day (Office Closed)
DESCRIPTION:
URL:https://bdsrafoundation.org/event/martin-luther-king-jr-day-office-closed/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231217T190000
DTEND;TZID=America/New_York:20231217T200000
DTSTAMP:20260421T151604
CREATED:20231208T230500Z
LAST-MODIFIED:20231208T230500Z
UID:18314-1702839600-1702843200@bdsrafoundation.org
SUMMARY:Holiday Grief Chat
DESCRIPTION:Join host and bereaved Batten mother Peggy DiCapua for BDSRA’s Holiday Grief Chat on Sunday\, December 17\, at 7:00 PM EST. \nThe holidays can be a challenging time in the face of the loss of a loved one. This is an opportunity for loved ones to gather\, share\, and support one another. We understand that each stage of this journey is different\, and we are here for you. \nBDSRA extends its love and support to those bereaved family members this holiday season. \nClick here to register. 
URL:https://bdsrafoundation.org/event/holiday-grief-chat-2/
CATEGORIES:Grief Chat
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231213T180000
DTEND;TZID=America/New_York:20231213T190000
DTSTAMP:20260421T151604
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;VALUE=DATE:20231203
DTEND;VALUE=DATE:20231204
DTSTAMP:20260421T151604
CREATED:20231202T032715Z
LAST-MODIFIED:20231202T033949Z
UID:18302-1701561600-1701647999@bdsrafoundation.org
SUMMARY:Board of Directors Meeting
DESCRIPTION:The BDSRA Foundation Board of Directors will meet virtually on Sunday\, December 3\, 2023\, at 4 p.m. EST. The meeting agenda is below.
URL:https://bdsrafoundation.org/event/board-of-directors-meeting/
LOCATION:Zoom
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231130T180000
DTEND;TZID=America/New_York:20231130T190000
DTSTAMP:20260421T151604
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:20231024T180000
DTEND;TZID=America/New_York:20231024T190000
DTSTAMP:20260421T151604
CREATED:20231002T142042Z
LAST-MODIFIED:20231019T130052Z
UID:18110-1698170400-1698174000@bdsrafoundation.org
SUMMARY:2023 Boo Bash
DESCRIPTION:Grab your costumes and join us for a frightfully FUN time at the 2023 Boo Bash taking place on Tuesday\, October 24 at 6 PM EDT via Zoom! \nThe deadline to order party kits has passed. You may purchase the supplies by visiting clicking the links below. \n“How to Catch a Witch” Book \nBoo Bash Craft \nA zoom link will be sent to the email address you use to register\, along with instructions on how to join in the SPOOK-tacular fun. Families are welcome to request a kit for each child who will be participating! \nClick here to register!
URL:https://bdsrafoundation.org/event/2023-boo-bash/
LOCATION:Zoom
CATEGORIES:Holidays,Seasonal Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20231002T190000
DTEND;TZID=America/New_York:20231002T200000
DTSTAMP:20260421T151604
CREATED:20230918T201651Z
LAST-MODIFIED:20230918T201651Z
UID:18063-1696273200-1696276800@bdsrafoundation.org
SUMMARY:Fall Grief Chat
DESCRIPTION:Join the Batten community for BDSRA’s Fall Grief Chat on October 2 at 7 p.m. EDT. Three sessions lead by community members will be offered — one each for Bereaved SIBs (led by SIBs leader Jeni Montavon)\, active parents and caregivers (led by Dr. Joseph Vigil)\, and bereaved parents and caregivers as part of the Life Goes On program (led by bereaved parent Peggy DiCapua). \nPlease select a ticket for the session that best fits your needs. Please register individually. Once you register\, you will receive an email confirmation and a Zoom link for the session you chose. \nClick here to register.
URL:https://bdsrafoundation.org/event/fall-grief-chat-october-2023/
LOCATION:Zoom
CATEGORIES:Grief Chat
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230823T180000
DTEND;TZID=America/New_York:20230823T190000
DTSTAMP:20260421T151604
CREATED:20230809T184336Z
LAST-MODIFIED:20230818T130605Z
UID:17920-1692813600-1692817200@bdsrafoundation.org
SUMMARY:Dog Days of Summer 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 Dog Days of Summer Party Wednesday\, August 23rd at 6:00 PM EST.\n\nThe deadline to order party kits has passed. You may still register to attend the party. Click here if you wish to purchase the book that’ll be read during the party yourself.  \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! \nClick here to register!
URL:https://bdsrafoundation.org/event/dog-days-of-summer-party/
LOCATION:Zoom
CATEGORIES:Seasonal Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230714
DTEND;VALUE=DATE:20230717
DTSTAMP:20260421T151604
CREATED:20230428T194709Z
LAST-MODIFIED:20230428T200732Z
UID:16313-1689292800-1689551999@bdsrafoundation.org
SUMMARY:Annual Family Conference | Denton\, TX
DESCRIPTION:Visit the Family Conference Home Page
URL:https://bdsrafoundation.org/event/annual-family-conference-denton-tx/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230609
DTEND;VALUE=DATE:20230612
DTSTAMP:20260421T151604
CREATED:20230420T155133Z
LAST-MODIFIED:20230610T183018Z
UID:16227-1686268800-1686527999@bdsrafoundation.org
SUMMARY:International Batten Disease Awareness Day/Virtual 5K
DESCRIPTION:Our goal is to honor and support those affected by Batten disease and to raise awareness and funds so BDSRA can continue to advocate for all CLN types. \nUPDATE: Donations will be accepted through Sunday\, June 11th. \nAbout this event: Join us as we celebrate families around the world and raise awareness and funds! BDSRA is hosting the 2023 International Batten Disease Awareness Day Virtual 5K on Friday\, June 9th\, 2023. \nSIGN UP ON THE OFFICIAL REGISTRATION PAGE HERE \nWhat exactly IS a Virtual 5K?: It is just like any other 5K\, except there is no official race location. The virtual part of this means no traveling and no early start times! It also means you get to choose where\, with whom\, and even how you want to complete the 5K. This 5K can be done at any time leading up to June 9th. It can even be done in increments\, keep track of your distance until you hit the 5K. \nHow to participate to raise funds and awareness: This event is open to individuals of all ages and abilities. Once you register\, either as an individual or as part of a team\, the focus then shifts to raising funds. Set a personal/team fundraising goal and encourage your family\, friends\, community\, etc. to donate to your fundraisers. BDSRA set a $10\,000 goal this year. The proceeds you raise towards that goal help BDSRA build and maintain staff who’ll provide compassionate support and advocacy for all types of Batten disease. \n \nDuring International Batten Disease Awareness Day we ask participants to post pictures of themselves on their 5K route. Tag BDSRA in your posts and use the hashtag #BattenDay2023. By using #BattenDay2023 and tagging BDSRA on your social media posts\, we will be able to keep up with the fun. \nOrdering T-Shirts: Pictured below are this year’s T-shirts. \n                            Front                                                 Back \n   \nUPDATE: The T-shirt order deadline has passed. \nRacing Bibs: Who are you running for in this virtual 5K? Click the button below to download this year’s racing bib and write who you’re dedicating your virtual walk/run for. Share on social media\, use the hashtag #BattenDay2023\, and tag BDSRA to have your post shared! \nClick here to download your racing bib!
URL:https://bdsrafoundation.org/event/international-batten-disease-awareness-day-virtual-5k-2023/
CATEGORIES:Advocacy Event,Seasonal Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230423T170000
DTEND;TZID=America/New_York:20230423T190000
DTSTAMP:20260421T151604
CREATED:20230419T205232Z
LAST-MODIFIED:20230419T205232Z
UID:16205-1682269200-1682276400@bdsrafoundation.org
SUMMARY:BDSRA Board of Directors Quarterly Meeting
DESCRIPTION:BDSRA’s Quarterly Board Meeting will take place Sunday\, April 23rd from 5-7 p.m. EST via Zoom. \nTake a look at the meeting agenda below.
URL:https://bdsrafoundation.org/event/bdsra-board-of-directors-quarterly-meeting-april-2023/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230215T180000
DTEND;TZID=America/New_York:20230215T190000
DTSTAMP:20260421T151604
CREATED:20230120T203418Z
LAST-MODIFIED:20230209T160649Z
UID:15848-1676484000-1676487600@bdsrafoundation.org
SUMMARY:BDSRA Virtual Family Valentine's Day Party
DESCRIPTION:Love is in the air! Join us for the BDSRA Virtual Family Valentine’s Day Party on Wednesday\, February 15th at 6 p.m. EST. \nThe deadline for reserving party kits has passed\, but families can still register to attend the event and purchase the book that’ll be read during the party (the link for the book is on the registration page). \nClick here to register!
URL:https://bdsrafoundation.org/event/bdsra-virtual-valentines-day-party-2023/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20230121T090000
DTEND;TZID=America/Chicago:20230121T170000
DTSTAMP:20260421T151604
CREATED:20230120T224740Z
LAST-MODIFIED:20230120T224814Z
UID:15853-1674291600-1674320400@bdsrafoundation.org
SUMMARY:BDSRA Board of Directors Quarterly Meeting
DESCRIPTION:BDSRA’s Quarterly Board Meeting will take place Saturday\, January 21st from 9 a.m. to 5 p.m. CST in Chicago. Take a look at the meeting agenda by clicking the link below. \nClick here to view the Board Meeting Agenda. 
URL:https://bdsrafoundation.org/event/bdsra-board-of-directors-quarterly-meeting-january-2023/
END:VEVENT
END:VCALENDAR