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X-WR-CALNAME:Koolen-de Vries Syndrome Foundation | KDVS
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X-WR-CALDESC:Events for Koolen-de Vries Syndrome Foundation | KDVS
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BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260504T190000
DTEND;TZID=America/Detroit:20260504T200000
DTSTAMP:20260608T172226
CREATED:20260428T151434Z
LAST-MODIFIED:20260428T151917Z
UID:20518-1777921200-1777924800@kdvsfoundation.org
SUMMARY:Summit Planning Committee Meeting
DESCRIPTION:Join Summit Co-Chairs Katie Maher & Tony Pechek to dive into the feedback we received from the 2025 KdVSF PAS. Once we analyze and discuss what participants had to say\, then we’ll begin making some decisions about what we’ll carry into this next summit in Colorado. \nWe’ll also begin delegating tasks and responsibilities to our lovely summit committee. If there’s anything in particular that you’d like to be the point person for\, please come to the meeting with that information! \nIf you are unable to attend\, but would still like to be involved in the process\, please send an email to summit@supportingkdvs.org. \n 
URL:https://kdvsfoundation.org/event/summit-committee-meeting/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260422
DTEND;VALUE=DATE:20260423
DTSTAMP:20260608T172226
CREATED:20260331T191824Z
LAST-MODIFIED:20260331T191824Z
UID:20440-1776816000-1776902399@kdvsfoundation.org
SUMMARY:KdVSF Presents: Kool Klinic\, Grand Opening Day!
DESCRIPTION:A day to celebrate our first-ever Kool Klinic officially opening! \nRead more about our inaugural Kool Klinic\, dates patients will be seen and how to get on our patient schedule: HERE
URL:https://kdvsfoundation.org/event/kdvsf-presents-kool-klinic-grand-opening-day/
LOCATION:Children’s Hospital Colorado\, 13123 E 16th Ave\, Aurora\, CO\, 80045\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260412T200000
DTEND;TZID=America/Detroit:20260412T200000
DTSTAMP:20260608T172226
CREATED:20250904T193418Z
LAST-MODIFIED:20260307T230055Z
UID:19588-1776024000-1776024000@kdvsfoundation.org
SUMMARY:KdVSF Connect - All About Puberty
DESCRIPTION:Join the KdVS Foundation for a meeting all about puberty\, open to KdVS families looking for information or to provide support to others! We look forward to connecting and supporting you. \nSunday\, 04/12/2026 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-all-about-puberty/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260316T200000
DTEND;TZID=America/New_York:20260316T210000
DTSTAMP:20260608T172226
CREATED:20260307T231018Z
LAST-MODIFIED:20260312T184833Z
UID:20398-1773691200-1773694800@kdvsfoundation.org
SUMMARY:FIRST Summit 2027 Planning Session!
DESCRIPTION:Join Summit Co-Chairs Katie Maher & Tony Pechek for a brief informational meeting about how you can get involved in making the 2027 KdVSF PAS in Denver the biggest and best summit yet! We’ll be discussing meeting cadence over the next 17 months\, tasks\, and we’ll be collecting ideas and thoughts from our summit committee members. \nIf you are unable to attend this time around\, but would still like to be involved in the process\, have no fear\, there will be more opportunities to join!
URL:https://kdvsfoundation.org/event/first-summit-2027-planning-session/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260308T200000
DTEND;TZID=America/Detroit:20260308T200000
DTSTAMP:20260608T172226
CREATED:20250904T193136Z
LAST-MODIFIED:20260307T230028Z
UID:19586-1773000000-1773000000@kdvsfoundation.org
SUMMARY:KdVSF Connect - Caregiver Emotional Support and Chat
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\, 03/08/2026 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-caregiver-emotional-support-and-chat-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260208T200000
DTEND;TZID=America/Detroit:20260208T210000
DTSTAMP:20260608T172226
CREATED:20250904T192842Z
LAST-MODIFIED:20250904T192842Z
UID:19584-1770580800-1770584400@kdvsfoundation.org
SUMMARY:KdVSF Connect - All About Speech
DESCRIPTION:Join the KdVS Foundation for a meeting all about speech\, open to any KdVS families! We look forward to connecting and supporting you. \nSunday\, 02/08/2026 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-all-about-speech/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260111T200000
DTEND;TZID=America/Detroit:20260111T210000
DTSTAMP:20260608T172226
CREATED:20250904T192531Z
LAST-MODIFIED:20250904T192531Z
UID:19582-1768161600-1768165200@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\, 01/11/2026 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-newly-diagnosed-families-7/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20251109T200000
DTEND;TZID=America/Detroit:20251109T210000
DTSTAMP:20260608T172226
CREATED:20250904T192343Z
LAST-MODIFIED:20250904T192343Z
UID:19579-1762718400-1762722000@kdvsfoundation.org
SUMMARY:KdVSF Connect - Caregiver Emotional Support and Chat
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\, 11/09/2024 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-caregiver-emotional-support-and-chat/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251012T200000
DTEND;TZID=America/New_York:20251012T210000
DTSTAMP:20260608T172226
CREATED:20250904T192011Z
LAST-MODIFIED:20250904T192011Z
UID:19577-1760299200-1760302800@kdvsfoundation.org
SUMMARY:KdVSF Connect - All About School
DESCRIPTION:Join the KdVS Foundation for a meeting all about school\, open to any KdVS families! We look forward to connecting and supporting you. \nSunday\, 10/12/2025 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-all-about-school/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250930T110000
DTEND;TZID=America/New_York:20250930T120000
DTSTAMP:20260608T172226
CREATED:20250921T165121Z
LAST-MODIFIED:20250922T222720Z
UID:19638-1759230000-1759233600@kdvsfoundation.org
SUMMARY:KdVSF Presents: Natural History Study Updates
DESCRIPTION:Join us for a virtual Natural History Study Update meeting on Tuesday\, September 30 at 11am EST.\n\n\n\nHear directly from KdVS experts:\nDr. Nicolo Pini – EEG study updates\nMeagan Hutchinson – additional data and research progress\nDr. Anna Pfalzer – research insights and next steps\n\n\n\nThis event is for all who participated in research at Summit 2025 AND for anyone interested in participating in future research\, you don’t want to miss it!\n\n 
URL:https://kdvsfoundation.org/event/kdvsf-presents-natural-history-study-updates/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250914T200000
DTEND;TZID=America/New_York:20250914T210000
DTSTAMP:20260608T172226
CREATED:20250904T191556Z
LAST-MODIFIED:20250904T192058Z
UID:19575-1757880000-1757883600@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\, 09/14/2025 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-newly-diagnosed-families-6/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20250622T200000
DTEND;TZID=America/Detroit:20250622T210000
DTSTAMP:20260608T172226
CREATED:20240917T011838Z
LAST-MODIFIED:20240917T011838Z
UID:18847-1750622400-1750626000@kdvsfoundation.org
SUMMARY:KdVSF Connect - Get Excited for Summit!
DESCRIPTION:Are you attending the Koolen-de Vries Syndrome Foundation’s Patient Advocacy Summit in Chicago? This special KdVSF Connect is a chance to ask any of your last-minute Summit questions!   The event takes place June 22\, 2025 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 in our community. We would love to have you join us! \nDon’t forget to register here!
URL:https://kdvsfoundation.org/event/kdvsf-connect-get-excited-for-summit/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250526T190000
DTEND;TZID=America/New_York:20250526T200000
DTSTAMP:20260608T172226
CREATED:20250512T143520Z
LAST-MODIFIED:20250512T143520Z
UID:19239-1748286000-1748289600@kdvsfoundation.org
SUMMARY:Chicago Concierge
DESCRIPTION:Join our KdVS Chicago-based family\, The Mahers\, on May 26th at 6PM CST virtually for a deep dive on Chicago must-sees while you’re at the summit this summer. From incredible downtown stops like the Willis Tower\, Shedd Aquarium\, or the Millennium Park Chicago Bean to suburban stops like Brookfield Zoo\, Morton Arboretum\, or the premier shopping destination at Oak Brook Center\, the Mahers will help you navigate your travel plans. They’ll help you choose your best mode of travel (Metra train\, Uber/Lyft\, the famous Chicago “L\,” etc.) while also making recommendations of great eats while you’re out! Pop in anytime between 7:00PM and 8:00PM EST to learn more about Chicago in the summertime!
URL:https://kdvsfoundation.org/event/chicago-concierge/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250512T190000
DTEND;TZID=America/New_York:20250512T200000
DTSTAMP:20260608T172226
CREATED:20250512T142833Z
LAST-MODIFIED:20250512T142833Z
UID:19237-1747076400-1747080000@kdvsfoundation.org
SUMMARY:Summit Registration Chat
DESCRIPTION:Join our chat from 7:00-8:00pm EST to chat about Registration for KdVSF Summit 2025!
URL:https://kdvsfoundation.org/event/summit-registration-chat/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20250504T200000
DTEND;TZID=America/Detroit:20250504T210000
DTSTAMP:20260608T172226
CREATED:20240917T010723Z
LAST-MODIFIED:20240917T010723Z
UID:18845-1746388800-1746392400@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\, 05/04/2025 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-newly-diagnosed-families-5/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20250406T200000
DTEND;TZID=America/Detroit:20250406T210000
DTSTAMP:20260608T172226
CREATED:20240917T010258Z
LAST-MODIFIED:20240917T010258Z
UID:18843-1743969600-1743973200@kdvsfoundation.org
SUMMARY:KdVSF Connect - Kool Meet Up
DESCRIPTION:Join the KdVS Foundation for a Kool Meet Up 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\, 04/06/2025 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-kool-meet-up-3/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20250309T200000
DTEND;TZID=America/Detroit:20250309T210000
DTSTAMP:20260608T172226
CREATED:20240917T005944Z
LAST-MODIFIED:20240917T005944Z
UID:18841-1741550400-1741554000@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\, 03/09/2025 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-caregiver-emotional-support-4/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20250223T200000
DTEND;TZID=America/Detroit:20250223T210000
DTSTAMP:20260608T172226
CREATED:20240917T005605Z
LAST-MODIFIED:20240917T005605Z
UID:18839-1740340800-1740344400@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\, 02/23/2025 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-newly-diagnosed-families-4/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20250112T200000
DTEND;TZID=America/Detroit:20250112T210000
DTSTAMP:20260608T172226
CREATED:20240917T004734Z
LAST-MODIFIED:20240917T004734Z
UID:18837-1736712000-1736715600@kdvsfoundation.org
SUMMARY:KdVSF Connect - Kool Meet Up
DESCRIPTION:Join the KdVS Foundation for a Kool Meet Up 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\, 1/12/2025 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-kool-meet-up-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20241110T200000
DTEND;TZID=America/Detroit:20241110T210000
DTSTAMP:20260608T172226
CREATED:20240909T011244Z
LAST-MODIFIED:20240909T011244Z
UID:18831-1731268800-1731272400@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\, 11/10/2024 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-caregiver-emotional-support-3/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20241027T200000
DTEND;TZID=America/Detroit:20241027T210000
DTSTAMP:20260608T172226
CREATED:20240909T010446Z
LAST-MODIFIED:20240909T010446Z
UID:18828-1730059200-1730062800@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\, 10/27/2024 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-newly-diagnosed-families-3/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240929T200000
DTEND;TZID=America/New_York:20240929T210000
DTSTAMP:20260608T172226
CREATED:20240909T005858Z
LAST-MODIFIED:20240909T011640Z
UID:18826-1727640000-1727643600@kdvsfoundation.org
SUMMARY:KdVSF Connect - Kool Meet Up
DESCRIPTION:Join the KdVS Foundation for a Kool Meet Up 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\, 9/29/2024 at 8 pm EST
URL:https://kdvsfoundation.org/event/kdvsf-connect-kool-meet-up/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20240627T110000
DTEND;TZID=America/Detroit:20240627T120000
DTSTAMP:20260608T172226
CREATED:20240626T142927Z
LAST-MODIFIED:20240626T144107Z
UID:18693-1719486000-1719489600@kdvsfoundation.org
SUMMARY:CSO Research Chat with genetic counselor
DESCRIPTION:Join us Thursday 6/27/24 for a Research Chat with KdVSF Chief Scientific Officer Dr. Anna Pfalzer and Adalyn Kim\, a genetic counselor student at Medical College of Wisconsin. This chat will take place at 11am ET\, so please mark your calendar and don’t forget to register!
URL:https://kdvsfoundation.org/event/research-chat-with-genetic-counselor-with-kdvsf-cso/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20240530T110000
DTEND;TZID=America/Detroit:20240530T120000
DTSTAMP:20260608T172226
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:20260608T172226
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:20260608T172226
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:20260608T172226
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:20260608T172226
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:20260608T172226
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:20260608T172226
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
END:VCALENDAR