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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;VALUE=DATE:20241104
DTEND;VALUE=DATE:20250102
DTSTAMP:20260501T053051
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:20260501T053051
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:20260501T053051
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:20231024T180000
DTEND;TZID=America/New_York:20231024T190000
DTSTAMP:20260501T053051
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:20230823T180000
DTEND;TZID=America/New_York:20230823T190000
DTSTAMP:20260501T053051
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:20230609
DTEND;VALUE=DATE:20230612
DTSTAMP:20260501T053051
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:20220621T180000
DTEND;TZID=America/New_York:20220621T190000
DTSTAMP:20260501T053051
CREATED:20220505T170351Z
LAST-MODIFIED:20220505T170631Z
UID:14084-1655834400-1655838000@bdsrafoundation.org
SUMMARY:BDSRA Virtual Summer Bash
DESCRIPTION:Registration is open for BDSRA’s Virtual Summer Bash that will take place on Tuesday\, June 21 at 6 p.m. ET! \nJoin us for an evening filled with activities we hope bring joy to your entire family and help kick start your summer fun! \nRegister by Wednesday\, June 8th to receive your free activity box. Activity boxes are limited to U.S. families at this time. \nClick here to register!
URL:https://bdsrafoundation.org/event/bdsra-virtual-summer-bash/
CATEGORIES:Seasonal Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220310T173000
DTEND;TZID=America/New_York:20220310T183000
DTSTAMP:20260501T053051
CREATED:20220118T204308Z
LAST-MODIFIED:20220309T162208Z
UID:13657-1646933400-1646937000@bdsrafoundation.org
SUMMARY:Stay Golden: St. Patrick's Day Party
DESCRIPTION:Registration is now open for BDSRA’s Stay Golden Saint Patrick’s Day Party taking place Thursday\, March 10th at 5:30p EST! Join the BDSRA team for a jolly good party with crafts\, games\, and a festive book! Register by March 1st. to receive a St .Patrick’s Party Box! (Boxes for U.S Families only). You can register to receive a box or just attend the virtual party. We would be lucky to see you there! Register here: https://web.charityengine.net/StayGoldenParty
URL:https://bdsrafoundation.org/event/bdsra-stay-golden-st-patricks-day-party-sibs-cln-ncl/
CATEGORIES:Seasonal Events
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
END:VEVENT
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