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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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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250301T130000
DTEND;TZID=America/New_York:20250301T140000
DTSTAMP:20260417T033138
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;TZID=America/New_York:20250211T183000
DTEND;TZID=America/New_York:20250211T193000
DTSTAMP:20260417T033138
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/New_York:20241013T160000
DTEND;TZID=America/New_York:20241013T170000
DTSTAMP:20260417T033138
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:20260417T033138
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;TZID=America/New_York:20240619T183000
DTEND;TZID=America/New_York:20240619T193000
DTSTAMP:20260417T033138
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:20240214T183000
DTEND;TZID=America/New_York:20240214T193000
DTSTAMP:20260417T033138
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:20260417T033138
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
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