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BEGIN:DAYLIGHT
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240301T090000
DTEND;TZID=America/New_York:20240301T163000
DTSTAMP:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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:20260421T134036
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230116
DTEND;VALUE=DATE:20230117
DTSTAMP:20260421T134036
CREATED:20230110T193613Z
LAST-MODIFIED:20230110T200438Z
UID:15830-1673827200-1673913599@bdsrafoundation.org
SUMMARY:Martin Luther King Jr. Day (Office Closed)
DESCRIPTION:The BDSRA Foundation office will be closed on Monday\, January 16th in observance of Martin Luther King Jr. Day.
URL:https://bdsrafoundation.org/event/martin-luther-king-jr-day-2023-office-closed/
CATEGORIES:Holidays
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221214T180000
DTEND;TZID=UTC:20221214T190000
DTSTAMP:20260421T134036
CREATED:20221205T175510Z
LAST-MODIFIED:20221205T234042Z
UID:15746-1671040800-1671044400@bdsrafoundation.org
SUMMARY:Holiday Grief Chat
DESCRIPTION:BDSRA Foundation will host a Holiday Grief Chat on Wednesday\, December 14th at 6:00 p.m. EST.  BDSRA knows the holidays can be a difficult time for grieving individuals and families. This is an opportunity for loved ones to gather\, share and support one another. Register by clicking the link below and join the event with the zoom link that will be sent via email following registration. \nClick here to register.
URL:https://bdsrafoundation.org/event/holiday-grief-chat/
CATEGORIES:Grief Chat
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221025T180000
DTEND;TZID=UTC:20221025T190000
DTSTAMP:20260421T134036
CREATED:20220830T131904Z
LAST-MODIFIED:20221004T164629Z
UID:15528-1666720800-1666724400@bdsrafoundation.org
SUMMARY:3rd Annual BDSRA Boo Bash
DESCRIPTION:Autumn leaves are falling which means Halloween is calling! Join us for the 3rd Annual BDSRA Boo Bash taking place on October 25th at 6 p.m. EST! Prepare for an evening filled with tricks\, treats\, activities\, and a story! The deadline for activity boxes (limited to U.S. families only) is Tuesday\, October 11th.\n \nClick the link below to register and join the event on October 25th with the zoom link sent after registration. \nClick here to register!
URL:https://bdsrafoundation.org/event/3rd-annual-bdsra-boo-bash/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221004T190000
DTEND;TZID=UTC:20221004T200000
DTSTAMP:20260421T134036
CREATED:20220830T130431Z
LAST-MODIFIED:20220912T154648Z
UID:15524-1664910000-1664913600@bdsrafoundation.org
SUMMARY:Peer Support Group Leader Training
DESCRIPTION:Join us for BDSRA Peer Support Group Leader Training on Tuesday\, October 4th at 7 p.m. EST. This session is open to anyone interested in helping others share their stories\, supporting them during their Batten journeys\, and leading support groups for the Batten community. \nClick the link below to register and join the session on October 4th with the zoom link sent after registration. \nClick here to register!
URL:https://bdsrafoundation.org/event/peer-support-group-leader-training/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20220924T090000
DTEND;TZID=America/Los_Angeles:20220924T113000
DTSTAMP:20260421T134036
CREATED:20220909T192401Z
LAST-MODIFIED:20220912T153854Z
UID:15552-1664010000-1664019000@bdsrafoundation.org
SUMMARY:Bike For Batten 2022 (Colville\, WA)
DESCRIPTION:Registration for the 2nd Annual Bike for Batten fundraiser is open! \nThis fundraiser\, organized by Bekah Murphy\, a CLN2 Batten aunt\, features bike rides in Nampa\, Idaho on Saturday\, September 17th and Colville\, Washington on Saturday\, September 24th. \nClick here to read Bekah’s story and register!
URL:https://bdsrafoundation.org/event/bike-for-batten-2022-colville-wa/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220918T190000
DTEND;TZID=UTC:20220918T200000
DTSTAMP:20260421T134036
CREATED:20220909T185318Z
LAST-MODIFIED:20220912T154101Z
UID:15545-1663527600-1663531200@bdsrafoundation.org
SUMMARY:Advocacy Committee Meeting
DESCRIPTION:Our Advocacy Committee invites you to discuss local and federal advocacy efforts\, Newborn Screening\, Rare Disease Week\, how to share your story\, and more! \nVirtual meetings will be held on the third Sunday of each odd month at 7 p.m. ET. The first meeting will be held on Sunday\, September 18th! \nPlease email info@bdsrafoundation.org to get started!
URL:https://bdsrafoundation.org/event/advocacy-committee-meeting/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20220917T090000
DTEND;TZID=America/Denver:20220917T120000
DTSTAMP:20260421T134036
CREATED:20220909T191616Z
LAST-MODIFIED:20220909T192245Z
UID:15548-1663405200-1663416000@bdsrafoundation.org
SUMMARY:Bike For Batten 2022 (Nampa\, ID)
DESCRIPTION:Registration for the 2nd Annual Bike for Batten fundraiser is open! \nThis fundraiser\, organized by Bekah Murphy\, a CLN2 Batten aunt\, features bike rides in Nampa\, Idaho on Saturday\, September 17th and Colville\, Washington on Saturday\, September 24th. \nClick here to read Bekah’s story and register!
URL:https://bdsrafoundation.org/event/bike-for-batten-2022/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220908T190000
DTEND;TZID=UTC:20220908T200000
DTSTAMP:20260421T134036
CREATED:20220816T193330Z
LAST-MODIFIED:20220816T193441Z
UID:15487-1662663600-1662667200@bdsrafoundation.org
SUMMARY:BDSRA Quarterly Grief Chat
DESCRIPTION:The BDSRA Foundation will host its next Quarterly Grief Chat on Thursday\, September 8th at 7:00 p.m. EST. This is an opportunity for loved ones to gather\, share and support one another. BDSRA understands that each stage of this journey is different\, and we are here for you. \nRegister to attend by visiting this link: https://web.charityengine.net/Default.aspx?tsid=22540 \nJoin the event with the zoom link that will be sent via email following registration.
URL:https://bdsrafoundation.org/event/bdsra-quarterly-grief-chat/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220817T180000
DTEND;TZID=UTC:20220817T190000
DTSTAMP:20260421T134036
CREATED:20220728T201912Z
LAST-MODIFIED:20220728T212843Z
UID:15461-1660759200-1660762800@bdsrafoundation.org
SUMMARY:Ask-An-Expert: BDSRA Family Conference Research Presentations Debrief
DESCRIPTION:Join us for Ask-An-Expert: BDSRA Family Conference Research Presentations Debrief on Wednesday\, August 17th at 6 p.m. EST with Batten experts. This session will recap the research presentations at this year’s Family Conference and have a live Q&A. \nRegister by visiting this link: https://web.charityengine.net/Default.aspx?tsid=22383
URL:https://bdsrafoundation.org/event/ask-an-expert-bdsra-family-conference-research-presentations-debrief/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220621T180000
DTEND;TZID=America/New_York:20220621T190000
DTSTAMP:20260421T134036
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:20220609T080000
DTEND;TZID=America/New_York:20220609T200000
DTSTAMP:20260421T134036
CREATED:20220330T155631Z
LAST-MODIFIED:20220330T155652Z
UID:13789-1654761600-1654804800@bdsrafoundation.org
SUMMARY:International Batten Awareness Day 2022
DESCRIPTION:Click Here to Register! \n  \nJune 9th is International Batten Disease Awareness Day!   \nOur goal is to honor and support those affected by Batten disease and to raise awareness. \n  \nAbout this event \nJoin us as we celebrate families around the world and raise awareness!  BDSRA is hosting the 2022 International Batten Disease Awareness Day Virtual 5K on June 9th\, 2022. \n  \nWhat exactly IS a Virtual 5K? \nIt 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. \n  \nHow to participate to raise funds and awareness \nThis event is open to individuals of all ages and abilities. Once you register\, either as an individual or as part of a team\, you are set. \n  \nSince this is not a sanctioned event\, there is no penalty if you are unable to complete any or all of the 5K. However\, during International Batten Disease Awareness Day we  will be asking participants to post pictures of themselves on their 5K route. \n  \nThis is completely optional – but since our goal is to bring awareness to Batten disease\, we want to do just that. And by using #battenday2022  and tagging @BDSRA on your social media posts\, we will be able to keep up with the fun. We will highlight posts tagged with @BDSRA in our June Illuminator which will be published June 30\, 2022. \n  \n  \n  \n  \n  \nInternational Batten Awareness Day 2022 – Batten Disease Support & Research Association (bdsra.org)
URL:https://bdsrafoundation.org/event/international-batten-awareness-day-2022/
CATEGORIES:Advocacy Event
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
END:VEVENT
END:VCALENDAR