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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=UTC:20220817T180000
DTEND;TZID=UTC:20220817T190000
DTSTAMP:20260421T221159
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:20260421T221159
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:20260421T221159
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
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220510T190000
DTEND;TZID=America/New_York:20220510T200000
DTSTAMP:20260421T221159
CREATED:20220412T192125Z
LAST-MODIFIED:20220412T192126Z
UID:13945-1652209200-1652212800@bdsrafoundation.org
SUMMARY:BDSRA Quarterly Grief Chat
DESCRIPTION:BDSRA understands that each stage of this journey is different\, and we are here for you. This is an opportunity for loved ones to gather\, share and support one another. Please consider joining us at 7:00pm EST on May 10th\, 2022. \nTo register visit: https://web.charityengine.net/GriefChat5/10/22
URL:https://bdsrafoundation.org/event/may-quarterly-grief-chat/
LOCATION:Zoom
CATEGORIES:Grief Chat
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220505T170000
DTEND;TZID=America/New_York:20220505T180000
DTSTAMP:20260421T221159
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:20220422T080000
DTEND;TZID=America/New_York:20220422T080000
DTSTAMP:20260421T221159
CREATED:20220330T160129Z
LAST-MODIFIED:20220330T160203Z
UID:13792-1650614400-1650614400@bdsrafoundation.org
SUMMARY:Facebook: Equipment Exchange Swap Day
DESCRIPTION:  \nThis is an opportunity for individuals and families to declutter unused equipment and assist other families in the process. \nAll items posted in the group on the 22 will be viewable to the community. We encourage you to search for items you need and post items you would like to see go to a new home. \nTo learn more about our year-round equipment exchange efforts visit: https://bdsrafoundation.org/family-grants/ \nTo Participate you must have a Facebook account- Link Below! \nEarth Day Equipment Exchange Swap Day | Facebook
URL:https://bdsrafoundation.org/event/facebook-equipment-exchange-swap-day/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220420T180000
DTEND;TZID=America/New_York:20220420T190000
DTSTAMP:20260421T221159
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:20220405T190000
DTEND;TZID=America/New_York:20220405T200000
DTSTAMP:20260421T221159
CREATED:20220315T201114Z
LAST-MODIFIED:20220315T201231Z
UID:13751-1649185200-1649188800@bdsrafoundation.org
SUMMARY:Support Group Leader Training
DESCRIPTION:  \nBDSRA wants to take a moment to thank you for your vulnerability and willingness to step into a leadership role. Volunteering to share your heart\, skills\, and experience will undoubtedly have a huge impact on those who walk through this journey with you. \nWe hope this training gives you some extra tools to be the best leader\, friend and support to those in your group. We also would like to acknowledge the hard work and dedication it takes to facilitate a peer support group\, and we want you to know we are here to support each of you. \nTo Register Visit: https://web.charityengine.net/SupportGroupLDR0405
URL:https://bdsrafoundation.org/event/bdsra-support-group-leader-training/
LOCATION:Zoom
CATEGORIES:Peer Support Group Leader Training
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220329T170000
DTEND;TZID=America/New_York:20220329T180000
DTSTAMP:20260421T221159
CREATED:20220224T165053Z
LAST-MODIFIED:20220309T162751Z
UID:13717-1648573200-1648576800@bdsrafoundation.org
SUMMARY:Ask-An-Expert Rare & Ready: Clearing Hurdles to Access Rare Disease Therapies
DESCRIPTION:Join us to learn more about the Rare & Ready initiative! \nSome states are developing detrimental strategies to slow or limit patients’ access to newly approved rare disease therapies. Learn about the programmatic obstacles put into place by Medicaid fee-for-service (FFS) and Medicaid managed care organizations (MCOs) and what families can do to clear these hurdles. \nTo Register: Click Here \n  \n 
URL:https://bdsrafoundation.org/event/ask-an-expert-rare-ready-clearing-hurdles-to-access-rare-disease-therapies/
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220322T190000
DTEND;TZID=America/New_York:20220322T200000
DTSTAMP:20260421T221159
CREATED:20220301T140531Z
LAST-MODIFIED:20220301T140531Z
UID:13733-1647975600-1647979200@bdsrafoundation.org
SUMMARY:Newly Diagnosed Meet and Greet
DESCRIPTION:A place for new families to meet one another\, learn more about BDSRA and our mission\, and discover opportunities for support throughout their child’s diagnosis. Register by visiting: https://web.charityengine.net/NewlyDiagnosed_Mar22/
URL:https://bdsrafoundation.org/event/newly-diagnosed-meet-and-greet/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220310T173000
DTEND;TZID=America/New_York:20220310T183000
DTSTAMP:20260421T221159
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
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220302T190000
DTEND;TZID=America/New_York:20220302T200000
DTSTAMP:20260421T221159
CREATED:20220224T173526Z
LAST-MODIFIED:20220224T173622Z
UID:13724-1646247600-1646251200@bdsrafoundation.org
SUMMARY:Rare Disease Week Debrief Party
DESCRIPTION:After a week of advocating for our Batten Community\, join BDSRA for a live debrief with staff and others who participated during this week of advocacy. We cannot wait to hear all your stories and victories! \nTo Register Visit: https://web.charityengine.net/RDWParty
URL:https://bdsrafoundation.org/event/rare-disease-week-debrief-party/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220222T190000
DTEND;TZID=America/New_York:20220222T200000
DTSTAMP:20260421T221159
CREATED:20220118T203348Z
LAST-MODIFIED:20220118T203349Z
UID:13649-1645556400-1645560000@bdsrafoundation.org
SUMMARY:Quarterly Grief Chat
DESCRIPTION:BDSRA understands that each stage of this journey is different\, and we are here for you. This is an opportunity for loved ones to gather\, share and support one another. Please consider joining us at 7:00pm EST on February 22nd\, 2022. Join the event with the zoom link that will be sent via email upon registration. Register here: https://web.charityengine.net/GriefChat_Feb2022/
URL:https://bdsrafoundation.org/event/quarterly-grief-chat/
CATEGORIES:Grief Chat
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220222
DTEND;VALUE=DATE:20220303
DTSTAMP:20260421T221159
CREATED:20220118T203732Z
LAST-MODIFIED:20220118T203732Z
UID:13654-1645488000-1646265599@bdsrafoundation.org
SUMMARY:Rare Disease Week on Capitol Hill
DESCRIPTION:Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues\, meet other advocates\, and share their unique stories with legislators. \n\nRare Disease Week
URL:https://bdsrafoundation.org/event/bdsra-rare-disease-week-on-capitol-hill/
CATEGORIES:Advocacy Event
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220221T170000
DTEND;TZID=America/New_York:20220221T180000
DTSTAMP:20260421T221159
CREATED:20220113T190922Z
LAST-MODIFIED:20220215T163319Z
UID:13620-1645462800-1645466400@bdsrafoundation.org
SUMMARY:Ask-An-Expert: Research Edition
DESCRIPTION:Registration is now open! Join us for Ask-An-Expert: Research Edition on Monday\, February 21st at 5p EST with Dr. David Pearce. Ask questions and learn about research updates important to our Batten Community during this LIVE Q&A. Register with the link and join from Facebook Live or the webinar link that will be sent via email upon registration. Register with the link provided.
URL:https://bdsrafoundation.org/event/aae222/
LOCATION:Zoom
ORGANIZER;CN="BDSRA":MAILTO:info@bdsra.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220118T180000
DTEND;TZID=America/New_York:20220118T190000
DTSTAMP:20260421T221159
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
END:VEVENT
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