BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Koolen-de Vries Syndrome Foundation | KDVS - ECPv6.15.18//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Koolen-de Vries Syndrome Foundation | KDVS
X-ORIGINAL-URL:https://kdvsfoundation.org
X-WR-CALDESC:Events for Koolen-de Vries Syndrome Foundation | KDVS
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/Detroit
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20210314T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20211107T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20220313T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20221106T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20230312T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20231105T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20240310T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20241103T060000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20240530T110000
DTEND;TZID=America/Detroit:20240530T120000
DTSTAMP:20260608T182926
CREATED:20240528T041522Z
LAST-MODIFIED:20240528T041522Z
UID:18675-1717066800-1717070400@kdvsfoundation.org
SUMMARY:CSO Chat with Researcher Dr. Yann Herault
DESCRIPTION:Join Koolen de Vries Syndrome Foundation’s Chief Scientific Officer Dr. Anna Pfalzer for a zoom webinar with Dr. Yann Herault. The webinar will be held May 30\, 2024 at 11 am ET. Don’t forget to register!
URL:https://kdvsfoundation.org/event/cso-chat-with-researcher-dr-yann-herault/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20240518T120000
DTEND;TZID=America/Detroit:20240518T130000
DTSTAMP:20260608T182926
CREATED:20230928T165925Z
LAST-MODIFIED:20231025T132422Z
UID:17584-1716033600-1716037200@kdvsfoundation.org
SUMMARY:KdVSF Connect - Meet & Greet
DESCRIPTION:Join the KdVS Foundation for a Meet & Greet open to all KdVS Individuals and their families! Join the zoom call to meet and greet new and old families alike. We look forward to connecting with you!  \nSaturday\, 5/18/2024 at 12 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-meet-greet-3/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20240425T120000
DTEND;TZID=America/Detroit:20240425T130000
DTSTAMP:20260608T182926
CREATED:20240417T154147Z
LAST-MODIFIED:20240417T154147Z
UID:18628-1714046400-1714050000@kdvsfoundation.org
SUMMARY:CSO Chat: Researcher James Schmidt
DESCRIPTION:Join our Chief Scientific Officer Dr. Anna Pfalzer on Thursday\, April 25\, 2024 at 12:00 PM ET as she chats with Research Associate James Schmidt who works in Dr. Helen Willsey’s Lab at UCSF. Register to join the webinar and listen live and ask your questions! \nCan’t join us on Thursday? That’s ok! The webinar will be recorded and will be posted on our YouTube page.
URL:https://kdvsfoundation.org/event/cso-chat-researcher-james-schmidt/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20240411T200000
DTEND;TZID=America/Detroit:20240411T210000
DTSTAMP:20260608T182926
CREATED:20230928T170420Z
LAST-MODIFIED:20231025T132350Z
UID:17588-1712865600-1712869200@kdvsfoundation.org
SUMMARY:KdVSF Connect - Caregiver Emotional Support
DESCRIPTION:Join the KdVS Foundation for a Caregiver Emotional Support meeting open to parents and caregivers of individuals diagnosed with KdVS! We look forward to connecting and supporting you. \nThursday\, 4/11/2024 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-caregiver-emotional-support-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20240312T200000
DTEND;TZID=America/Detroit:20240312T210000
DTSTAMP:20260608T182926
CREATED:20230928T171001Z
LAST-MODIFIED:20231025T132305Z
UID:17592-1710273600-1710277200@kdvsfoundation.org
SUMMARY:KdVSF Connect - Newly Diagnosed Families
DESCRIPTION:Join the KdVS Foundation for a Newly Diagnosed Families meeting open to any KdVS families diagnosed within the past 3 years)! We look forward to connecting and supporting you. \nTuesday\, 3/12/2024 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-newly-diagnosed-families-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20240229T100000
DTEND;TZID=America/Detroit:20240229T110000
DTSTAMP:20260608T182926
CREATED:20240219T124031Z
LAST-MODIFIED:20240219T124346Z
UID:18495-1709200800-1709204400@kdvsfoundation.org
SUMMARY:CSO Chat - Dr. Lacey Carmen Chetcuti
DESCRIPTION:Join us for a chat with Dr. Lacey Carmen Chetcuti of Stanford University about a new research study that will look at both children who are typically developing and children who might have some form of neurodevelopmental condition or delay. Learn all about the involvement\, benefits\, and how the information can be used. \nTo be eligible to participate you must be: \n• A parent of a child with autism\, a neurodevelopmental\, neuropsychiatric or genetic condition between the ages of 5-17 years old. \n• Willing to complete an online survey containing many questionnaires that will ask you to provide information about a range of your child’s behaviors
URL:https://kdvsfoundation.org/event/cso-chat-dr-lacey-carmen-chetcuti/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20240208T200000
DTEND;TZID=America/Detroit:20240208T210000
DTSTAMP:20260608T182926
CREATED:20230928T165736Z
LAST-MODIFIED:20231025T132234Z
UID:17582-1707422400-1707426000@kdvsfoundation.org
SUMMARY:KdVSF Connect - Meet & Greet
DESCRIPTION:Join the KdVS Foundation for a Meet & Greet open to all KdVS Individuals and their families! Join the zoom call to meet and greet new and old families alike. We look forward to connecting with you!  \nThursday\, 2/3/2024 at 8 pm EST\nSaturday\, 5/18/2024 at 12 pm EST \nZoom link coming soon.
URL:https://kdvsfoundation.org/event/kdvsf-connect-meet-greet-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20240125T123000
DTEND;TZID=America/Detroit:20240125T133000
DTSTAMP:20260608T182926
CREATED:20240112T144436Z
LAST-MODIFIED:20240116T163855Z
UID:18408-1706185800-1706189400@kdvsfoundation.org
SUMMARY:Introduction to the CHAMPION Study
DESCRIPTION:Join Chief Scientific Officer Dr. Anna Pfalzer to hear about the UCLA CHAMPION Study to learn more about this research opportunity. Register here. \n  \n  \nUCLA CHAMPION STUDY (CHROMATINOPATHIES AND AUTISM: MOTOR PHENOTYPING AND INDICATORS OF NEURODEVELOPMENT)\nThis study is being conducted both in-person at UCLA in Los Angeles and virtually. Eligible children anywhere in the United States can be enrolled – study materials would be mailed and assessments are administered via videoconferencing if travel to Los Angeles is not feasible. \nThe CHAMPION Study is being led by Dr. Rujuta B. Wilson\, MD\, a neurodevelopmental pediatric neurologist and researcher at UCLA who studies genetic neurodevelopmental conditions. This study is enrolling children 1 to 5 years old with Koolen-de Vries Syndrome or other Chromatin Modifying Disorders (also known as Chromatinopathies). Motor challenges tend to affect children who have KDVS or other Chromatin Modifying Disorders and this research hopes to develop better tools/methods to help identify\, monitor\, and evaluate delays as well as come up with better treatment and therapeutic options. Another goal of this study is to better understand the behavioral\, cognitive\, and social development of children with KDVS. As a part of the study\, behavioral\, cognitive\, and autism symptom assessments of your child will be administered. In addition\, your child would be asked to wear small sensors on his/her arms and legs during the day over a two-day period at home. Lastly\, a parent interview is conducted to gain further insight into your child’s medical history\, behavior\, and development. \nYour child will receive up to $100.00 for participation and you will be provided verbal and written feedback about your child’s development. If you are interested in having your child participate in this study or would like to seek additional information\, you can contact the study coordinator via email or phone: RQLy@mednet.ucla.edu / 310-206-1045.
URL:https://kdvsfoundation.org/event/introduction-to-the-champion-study/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20240121T200000
DTEND;TZID=America/Detroit:20240121T210000
DTSTAMP:20260608T182926
CREATED:20230928T170238Z
LAST-MODIFIED:20240118T164802Z
UID:17586-1705867200-1705870800@kdvsfoundation.org
SUMMARY:KdVSF Connect - Caregiver Emotional Support
DESCRIPTION:Join the KdVS Foundation for a Caregiver Emotional Support meeting open to parents and caregivers of individuals diagnosed with KdVS! We look forward to connecting and supporting you. \nSunday\, 1/21/2024 at 8 pm EST\nThursday\, 4/11/2024 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-caregiver-emotional-support/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20231105T200000
DTEND;TZID=America/Detroit:20231105T210000
DTSTAMP:20260608T182926
CREATED:20230928T171513Z
LAST-MODIFIED:20231026T154755Z
UID:17590-1699214400-1699218000@kdvsfoundation.org
SUMMARY:KdVSF Connect - Newly Diagnosed Families
DESCRIPTION:Join the KdVS Foundation for a Newly Diagnosed Families meeting open to any KdVS families diagnosed within the past 3 years)! We look forward to connecting and supporting you. \nSunday\, 11/5/2023 at 8 pm EST\nTuesday\, 3/12/2024 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-newly-diagnosed-families/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20231022T200000
DTEND;TZID=America/Detroit:20231022T210000
DTSTAMP:20260608T182926
CREATED:20230928T165527Z
LAST-MODIFIED:20230928T165527Z
UID:17580-1698004800-1698008400@kdvsfoundation.org
SUMMARY:KdVSF Connect - Meet & Greet
DESCRIPTION:Join the KdVS Foundation for a Meet & Greet open to all KdVS Individuals and their families! Join the zoom call to meet and greet new and old families alike. We look forward to connecting with you!  \nSunday\, 10/22/2023 at 8 pm EST\nThursday\, 2/3/2024 at 8 pm EST\nSaturday\, 5/18/2024 at 12 pm EST \nZoom link coming soon.
URL:https://kdvsfoundation.org/event/kdvsf-connect-meet-greet/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20230611T200000
DTEND;TZID=America/Detroit:20230611T203000
DTSTAMP:20260608T182926
CREATED:20220921T164847Z
LAST-MODIFIED:20221027T160522Z
UID:16908-1686513600-1686515400@kdvsfoundation.org
SUMMARY:KdVSF Connect - Summit Discussion
DESCRIPTION:Are you attending the Koolen-de Vries Syndrome Foundation’s Patient Advocacy Summit? This special KdVSF Connect is a chance to ask any of your last-minute Summit questions!   The event takes place June 11\, 2023 at 8 pm EASTERN TIME! Not sure what time that is for you? Check your timezone HERE! \nKdVSF Connect events are a great opportunity for the KdVS community to join together virtually to discuss topics of interest\, to receive support and to make new friends. We would love to have you join us! \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-summit-discussion-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20230610T120000
DTEND;TZID=America/Detroit:20230610T123000
DTSTAMP:20260608T182926
CREATED:20220921T164352Z
LAST-MODIFIED:20221027T160623Z
UID:16906-1686398400-1686400200@kdvsfoundation.org
SUMMARY:KdVSF Connect - Summit Discussion
DESCRIPTION:Are you attending the Koolen-de Vries Syndrome Foundation’s Patient Advocacy Summit? This special KdVSF Connect is a chance to ask any of your last-minute Summit questions!   The event takes place June 10\, 2023 at 12 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! \nKdVSF Connect events are a great opportunity for the KdVS community to join together virtually to discuss topics of interest\, to receive support and to make new friends. We would love to have you join us! \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-summit-discussion/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20230521T200000
DTEND;TZID=America/Detroit:20230521T210000
DTSTAMP:20260608T182926
CREATED:20220921T163251Z
LAST-MODIFIED:20221027T160351Z
UID:16904-1684699200-1684702800@kdvsfoundation.org
SUMMARY:KdVSF Connect - Verbal Speech Challenges
DESCRIPTION:Join the KdVSF Foundation to discuss Koolen-de Vries Syndrome and speech challenges. The event takes place May 21\, 2023 at 8 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! \nKdVSF Connect events are a great opportunity for the KdVS community to join together virtually to discuss topics of interest\, to receive support and to make new friends. We would love to have you join us! \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-verbal-speech-challenges/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20230423T200000
DTEND;TZID=America/Detroit:20230423T210000
DTSTAMP:20260608T182926
CREATED:20220921T162603Z
LAST-MODIFIED:20221027T160300Z
UID:16897-1682280000-1682283600@kdvsfoundation.org
SUMMARY:KdVSF Connect - Kool Family Meet & Greet
DESCRIPTION:Join the KdVS Foundation for a casual Meet & Greet virtual event! Kool individuals of all ages and their families are welcome to attend! The event takes place April 23\, 2023 at 8 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! \nKdVSF Connect events are a great opportunity for the KdVS community to join together virtually to discuss topics of interest\, to receive support and to make new friends. We would love to have you join us! \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-kool-family-meet-greet-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20230311T120000
DTEND;TZID=America/Detroit:20230311T130000
DTSTAMP:20260608T182926
CREATED:20220921T162215Z
LAST-MODIFIED:20221027T155314Z
UID:16895-1678536000-1678539600@kdvsfoundation.org
SUMMARY:KdVSF Connect - Emotional Support Group
DESCRIPTION:Join the KdVS Foundation for the virtual Emotional Support Group. This support group is for KdVS Caregivers. The event takes place March 11\, 2023 at 12 pm EASTERN TIME. Not sure what time that is for you? Check your time zone HERE! \nKdVSF Connect events are a great opportunity for the KdVS community to join together virtually to discuss topics of interest\, to receive support and to make new friends. We would love to have you join us! \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-emotional-support-group-4/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20230213T190000
DTEND;TZID=America/Detroit:20230213T190000
DTSTAMP:20260608T182926
CREATED:20230131T162329Z
LAST-MODIFIED:20230131T162329Z
UID:17151-1676314800-1676314800@kdvsfoundation.org
SUMMARY:GI Issues in the DEEs
DESCRIPTION:Come learn about GI issues such as reflux\, feeding tubes\, constipation\, and more from pediatric GI doctor and Koolen-de Vries Syndrome dad Russ Zwiener. The discussion will be led by Kaci Fisher\, a Koolen-de Vries Syndrome Foundation Board member and KdVS mom. This webinar is being co-hosted with DEE-P Connections. DEE-P Connections is dedicated to sharing resources with families caring for loved ones with severe epilepsy. \nRegister at: https://us02web.zoom.us/…/reg…/WN_FlYIyxvcTaSLUkYqfdUKGg
URL:https://kdvsfoundation.org/event/gi-issues-in-the-dees/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20230205T200000
DTEND;TZID=America/Detroit:20230205T204500
DTSTAMP:20260608T182926
CREATED:20220921T161319Z
LAST-MODIFIED:20221027T160103Z
UID:16891-1675627200-1675629900@kdvsfoundation.org
SUMMARY:KdVSF Connect - NEW Emotional Support Group Series
DESCRIPTION:We are trying something NEW! In the past\, the KdVSF Connect Emotional Support group meetings have been very popular. This February\, we are offering a small group series of emotional support group meetings. This group will meet four times in the month of February and we ask attendees to commit to attend 3 of the 4 group meetings. \nThe emotional support group meetings will be held on February 5\, 12\, 19 and 26 at 8 pm EASTERN. Not sure what time that is for you? Check your time zone HERE!  Each session will be 45 minutes. \nThis series of virtual meetings will offer a small group (limit of 10 individuals) the chance to take a deeper dive into grief\, hardships\, anxiety\, sadness and fears associated with raising an individual with Koolen-de Vries Syndrome. \nDon’t forget to register! Registering once will register you for all 4 days!
URL:https://kdvsfoundation.org/event/kdvs-connect-new-emotional-support-group-series/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20230107T120000
DTEND;TZID=America/Detroit:20230107T130000
DTSTAMP:20260608T182926
CREATED:20220921T160410Z
LAST-MODIFIED:20221027T155913Z
UID:16889-1673092800-1673096400@kdvsfoundation.org
SUMMARY:KdVSF Connect - Kool Family Meet & Greet
DESCRIPTION:Join the KdVS Foundation for a casual Meet & Greet virtual event! Kool individuals of all ages and their families are welcome to attend! The event takes place January 7\, 2023 at 12 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! \nKdVSF Connect events are a great opportunity for the KdVS community to join together virtually to discuss topics of interest\, to receive support and to make new friends. We would love to have you join us! \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-kool-family-meet-greet/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20221212T200000
DTEND;TZID=America/Detroit:20221212T210000
DTSTAMP:20260608T182926
CREATED:20221205T003328Z
LAST-MODIFIED:20221205T003816Z
UID:17053-1670875200-1670878800@kdvsfoundation.org
SUMMARY:Introduction to Help\, Hope\, Live
DESCRIPTION:The KdVS Foundation is proud to partner with Help Hope Live\, a trusted medical fundraising nonprofit that supports the rare disease community across the country. Don’t take on out-of-pocket medical expenses alone: trust the nonprofit fundraising experts\, and access benefits from one-on-one fundraising help to tax-deductible donations for donors to fundraising that won’t jeopardize your benefits.\n\n\n\nClick here to join the virtual meeting on December 12\, 2022 at 8PM ET!
URL:https://kdvsfoundation.org/event/introduction-to-help-hope-live/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20221210T120000
DTEND;TZID=America/Detroit:20221210T130000
DTSTAMP:20260608T182926
CREATED:20220921T160118Z
LAST-MODIFIED:20221027T155548Z
UID:16887-1670673600-1670677200@kdvsfoundation.org
SUMMARY:KdVSF Connect - Newly Diagnosed Meet & Greet
DESCRIPTION:Join the KdVS Foundation for a virtual Meet & Greet for newly diagnosed families (diagnosis within the last two years). The event takes place Saturday\, December 10\, 2022 at 12 pm EASTERN TIME. Not sure what time that is for you? Check your time zone HERE! \nKdVSF Connect events are a great opportunity for the KdVS community to join together virtually to discuss topics of interest\, to receive support and to make new friends. We would love to have you join us! \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-newly-diagnosed-meet-greet/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20221113T200000
DTEND;TZID=America/Detroit:20221113T210000
DTSTAMP:20260608T182926
CREATED:20220921T161741Z
LAST-MODIFIED:20221027T155447Z
UID:16893-1668369600-1668373200@kdvsfoundation.org
SUMMARY:KdVSF Connect - Epilepsy Discussion and Support
DESCRIPTION:In honor of Epilepsy Awareness Month\, this month’s KdVS Connect revolves around all things KdVS and Epilepsy. This virtual support group is open to anyone interested in the topic and it takes places on Sunday\, November 13\, 2022 at 8 pm EASTERN. Not sure what time that is for you? Check your time zone HERE! \nKdVSF Connect events are a great opportunity for the KdVS community to join together virtually to discuss topics of interest\, to receive support and to make new friends. We would love to have you join us! \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-epilepsy-discussion-and-support-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20221023T200000
DTEND;TZID=America/Detroit:20221023T200000
DTSTAMP:20260608T182926
CREATED:20220920T132808Z
LAST-MODIFIED:20220921T165913Z
UID:16880-1666555200-1666555200@kdvsfoundation.org
SUMMARY:KdVSF Connect - Emotional Support Group
DESCRIPTION:Join the KdVS Foundation for the virtual Emotional Support Group. This support group is for KdVS Caregivers. The event takes place October 23\, 2022 at 8 pm EASTERN TIME. Not sure what time that is for you? Check your time zone HERE! \nKdVSF Connect events are a great opportunity for the KdVS community to join together virtually to discuss topics of interest\, to receive support and to make new friends. We would love to have you join us! \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-emotional-support-group-3/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20221001T120000
DTEND;TZID=America/Detroit:20221001T130000
DTSTAMP:20260608T182926
CREATED:20220920T132311Z
LAST-MODIFIED:20220921T170002Z
UID:16878-1664625600-1664629200@kdvsfoundation.org
SUMMARY:KdVSF Connect - Kool Family Meet & Greet
DESCRIPTION:Join the KdVS Foundation for a casual Meet & Greet virtual event! Kool individuals of all ages and their families are welcome to attend! The event takes place October 1\, 2022 at 12 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! \nKdVSF Connect events are a great opportunity for the KdVS community to join together virtually to discuss topics of interest\, to receive support and to make new friends. We would love to have you join us! \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-meet-greet-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220925T200000
DTEND;TZID=America/Detroit:20220925T210000
DTSTAMP:20260608T182926
CREATED:20220920T131916Z
LAST-MODIFIED:20220922T181718Z
UID:16875-1664136000-1664139600@kdvsfoundation.org
SUMMARY:KdVSF Connect - Kool Family Meet & Greet
DESCRIPTION:Join the KdVS Foundation for a casual Meet & Greet virtual event! Kool individuals of all ages and their families are welcome to attend! The event takes place September 25\, 2022 at 8 pm EASTERN TIME! Not sure what time that is for you? Check your time zone HERE! \nKdVSF Connect events are a great opportunity for the KdVS community to join together virtually to discuss topics of interest\, to receive support and to make new friends. We would love to have you join us! \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-meet-greet/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220727T140000
DTEND;TZID=America/Detroit:20220727T150000
DTSTAMP:20260608T182926
CREATED:20220425T172149Z
LAST-MODIFIED:20220725T193717Z
UID:16295-1658930400-1658934000@kdvsfoundation.org
SUMMARY:Webinar with Brooke Latour\, KdVS Fellow
DESCRIPTION:Join the Koolen-de Vries Syndrome Foundation and KdVS Fellow Brooke Latour for an update on her past year of research. \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/webinar-with-brooke-latour-kdvs-fellow/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220623T200000
DTEND;TZID=America/Detroit:20220623T200000
DTSTAMP:20260608T182926
CREATED:20220602T174847Z
LAST-MODIFIED:20220602T174847Z
UID:16499-1656014400-1656014400@kdvsfoundation.org
SUMMARY:RARE-X Introduction
DESCRIPTION:Join Koolen-de Vries Syndrome Foundation and Megan O’Boyle of RARE-X for an introduction to the RARE-X platform. We are very excited about the launch of the KdVS Data Collection Program (DCP). When families contribute data\, researchers\, doctors and our community can understand more about Koolen-de Vries Syndrome and develop better treatments. \nThis webinar will be held on June 23\, 2022 at 8 pm ET. It will be recorded and shared across social media so families can view it at their convenience. \nParticipants in RARE-X can enroll from ANY country; however\, they will need to be able to understand English. Translations for 3-5 additional languages are expected within the next year. \nDon’t forget to register and submit any questions you might have!
URL:https://kdvsfoundation.org/event/rare-x-introduction/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220614T180000
DTEND;TZID=America/Detroit:20220614T190000
DTSTAMP:20260608T182926
CREATED:20220322T125535Z
LAST-MODIFIED:20220322T125622Z
UID:16197-1655229600-1655233200@kdvsfoundation.org
SUMMARY:Webinar with Bea Moise\, A Child Like Mine
DESCRIPTION:Join KdVS Foundation’s Kaci Fisher on June 14\, 2022 at 6 pm ET as she speaks with Bea Moise about the siblings of special needs individuals. The first half of the webinar Bea Moise will discuss a sibling’s perspective and the second half will be open for questions and discussions. \nBeatrice (Bea) Moise\, M.S.\, BCCS\, is a Board-Certified Cognitive Specialist\, Parenting Coach\, Author and National Speaker. She created A Child Like Mine to educate parents of children with unique atypical brains that have both behavior and learning needs\, while giving them the tools they need to be successful at home. \nRead more about Bea Moise at A Child Like Mine. \nRegistration information coming soon. \n  \n 
URL:https://kdvsfoundation.org/event/webinar-with-bea-moise-a-child-like-mine/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220604T130000
DTEND;TZID=America/Detroit:20220604T140000
DTSTAMP:20260608T182926
CREATED:20220408T024918Z
LAST-MODIFIED:20220524T023534Z
UID:16215-1654347600-1654351200@kdvsfoundation.org
SUMMARY:It Takes a Village - 5th thru 12th Grade IEPs
DESCRIPTION:Koolen-de Vries Syndrome Foundation\, iDefine and SETBP1 Society are excited to form a partnership called “It Takes a Village”. Through this partnership\, our wonderful communities will have the chance to share resources and join informative webinars that apply to our populations. \nThis webinar is for families with children in 5th grade through 12th grade. Join KdVS Foundation’s Kaci Fisher on June 4\, 2022 at 1 pm ET as she speaks with two experts in Individualized Education Plans (IEP) for middle and high school age children. \nPlease be sure to register!
URL:https://kdvsfoundation.org/event/it-takes-a-village-5th-thru-12th-grade-ieps/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220522T200000
DTEND;TZID=America/Detroit:20220522T200000
DTSTAMP:20260608T182926
CREATED:20211216T185040Z
LAST-MODIFIED:20220111T042944Z
UID:15421-1653249600-1653249600@kdvsfoundation.org
SUMMARY:KdVS Connect - Navigating Kool Kid Participation
DESCRIPTION:Join the Koolen-de Vries Syndrome Foundation for a virtual support group on May 22\, 2022 at 8 pm ET. Discussion will revolve around navigating Kool Kid participation with neuro-typical groups in school\, sports and making friends.  Don’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-navigating-kool-kid-participation/
END:VEVENT
END:VCALENDAR