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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
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BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20230205T200000
DTEND;TZID=America/Detroit:20230205T204500
DTSTAMP:20260608T195223
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:20260608T195223
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:20260608T195223
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:20260608T195223
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:20260608T195223
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:20260608T195223
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:20260608T195223
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:20260608T195223
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:20260608T195223
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:20260608T195223
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:20260608T195223
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:20260608T195223
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:20260608T195223
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
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220507T140000
DTEND;TZID=America/Detroit:20220507T150000
DTSTAMP:20260608T195223
CREATED:20220408T024548Z
LAST-MODIFIED:20220502T155232Z
UID:16210-1651932000-1651935600@kdvsfoundation.org
SUMMARY:It Takes a Village - IEPs PreK thru 4th Grade
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. \nThe first webinar is for families with children in PreK thru 4th grade. Join KdVS Foundation’s Kaci Fisher as she speaks with Kelly Rhyne (IDefine)\, an expert in Individualized Education Plans (IEP) for young school age children. \n 
URL:https://kdvsfoundation.org/event/it-takes-a-village-ieps-prek-thru-4th-grade/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220428T130000
DTEND;TZID=America/Detroit:20220428T140000
DTSTAMP:20260608T195223
CREATED:20220418T143622Z
LAST-MODIFIED:20220418T143724Z
UID:16263-1651150800-1651154400@kdvsfoundation.org
SUMMARY:Webinar with Dr. Katie Pecheck
DESCRIPTION:Join the KdVS Foundation for a conversation with Kool Mom and dentist\, Dr. Katie Pecheck. Register and submit your dental questions here. \n  \nAfter registering\, you will receive a confirmation email containing information about joining the webinar.
URL:https://kdvsfoundation.org/event/webinar-with-dr-katie-pecheck/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220409T120000
DTEND;TZID=America/Detroit:20220409T130000
DTSTAMP:20260608T195223
CREATED:20211216T184652Z
LAST-MODIFIED:20220111T042849Z
UID:15419-1649505600-1649509200@kdvsfoundation.org
SUMMARY:KdVS Connect - Verbal Speech Discussion
DESCRIPTION:Join the Koolen-de Vries Syndrome Foundation for a virtual KdVS Connect zoom call. On April 9\, 2022 at 12 pm ET\, attendees will have the chance to discuss all things related to speech. What works or has worked for your Kool Kid? How has communication changed or improved with age? Don’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-verbal-speech-discussion/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220313T200000
DTEND;TZID=America/Detroit:20220313T200000
DTSTAMP:20260608T195223
CREATED:20211216T184100Z
LAST-MODIFIED:20220111T042720Z
UID:15414-1647201600-1647201600@kdvsfoundation.org
SUMMARY:KdVS Connect - Young Adults & Parents
DESCRIPTION:Join Koolen-de Vries Syndrome Foundation for a virtual Zoom event. March 13\, 2022 at 8 pm ET – KdVS young adults and their parents are invited to discuss transitions to adulthood and independent living. Don’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-young-adults-parents/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220212T120000
DTEND;TZID=America/Detroit:20220212T130000
DTSTAMP:20260608T195223
CREATED:20211028T235542Z
LAST-MODIFIED:20211216T184307Z
UID:13736-1644667200-1644670800@kdvsfoundation.org
SUMMARY:KdVS Connect - Regional Groups
DESCRIPTION:Join us for KdVS Connect on February 12\, 2022 at 12 pm ET. This month’s theme is connection within your geographic region. Registration link below – make sure you tell us where you are joining our Zoom call from (Europe\, Australia/New Zealand\, Central/South America\, Africa\, Asia\, or if inside the USA\, please specify general region).
URL:https://kdvsfoundation.org/event/kdvs-connect-regional-groups/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220209T180000
DTEND;TZID=America/Detroit:20220209T190000
DTSTAMP:20260608T195223
CREATED:20220131T212722Z
LAST-MODIFIED:20220131T212722Z
UID:16011-1644429600-1644433200@kdvsfoundation.org
SUMMARY:Webinar - Speech Tracker Study
DESCRIPTION:Join us on February 9th\, 2022 at 6 pm ET for a conversation with Prof. Angela Morgan and her PhD student\, Olivia Van Reyk! They will be providing updates on their Speech Tracker study that builds on their previous research showing that speech and language is a core developmental challenge for children with Koolen-de Vries Syndrome. The data gathered helps researchers better understand prognosis and aids with developing more targeted speech therapies. \nDon’t forget to register!
URL:https://kdvsfoundation.org/event/webinar-speech-tracker-study/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20220116T200000
DTEND;TZID=America/Detroit:20220116T200000
DTSTAMP:20260608T195223
CREATED:20211216T182751Z
LAST-MODIFIED:20220111T042139Z
UID:15404-1642363200-1642363200@kdvsfoundation.org
SUMMARY:KdVS Connect - Emotional Support Group
DESCRIPTION:Join us on Zoom January 16\, 2022 at 8 pm ET for an Emotional support group for KdVS parents/caregivers. What’s been the most difficult part about being a KdVS parent? How do you cope?
URL:https://kdvsfoundation.org/event/kdvs-connect-emotional-support-group-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20211212T110000
DTEND;TZID=America/Detroit:20211212T120000
DTSTAMP:20260608T195223
CREATED:20211119T162537Z
LAST-MODIFIED:20211130T200519Z
UID:14265-1639306800-1639310400@kdvsfoundation.org
SUMMARY:Pediatric Ophthalmology Webinar
DESCRIPTION:Dr. Daphna Landau is an orbital and oculoplastic surgeon at the Goldschleger Eye Institute\, Sheba Medical Center\, Israel\, and a research affiliate at the division of Ophthalmology\, Children’s Hospital of Philadelphia (CHOP). She has an MD degree from Tel Aviv University and a BSc in Mathematics with Computer Science from the Technion – Israel Institute of Technology (cum laude on both). She is a graduate of the Rothschild Scholars Program\, the Technion Program for Excellence\, and won several prizes and scholarships for academic and clinical excellence. Dr. Landau was trained in oculoplastic surgery at CHOP. She participated in several international humanitarian delegations to tribal areas\, performing oculoplastic surgeries. Dr. Landau is an associate editor of Atlas of Orbital Imaging under Springer publications\, a collaborative work of world leaders in orbital surgery and imaging\, and is leading various academic and innovative projects. \nDr. Sharon Blum Meirovitch completed both her BSc degree in Medical Science and MD degree in Tel Aviv University\, Israel (Cum Laude in both). Between 2014-2019 she trained in ophthalmology at the Goldschleger Eye Institute\, Sheba Medical Center\, Israel\, after which she specialized in paediatric opthalmology and strabismus at the Tel Aviv Medical Center\, Israel. She is now part of the International Paediatric & Strabismus fellowship program at Moorfields Eye Hospital\, London\, UK. Dr. Blum Meirovitch won several scholarships for academic excellence and published numerous papers in the peer-reviewed literature.
URL:https://kdvsfoundation.org/event/pediatric-ophthalmology-webinar/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20211204T120000
DTEND;TZID=America/Detroit:20211204T130000
DTSTAMP:20260608T195223
CREATED:20210912T223311Z
LAST-MODIFIED:20211130T200103Z
UID:13339-1638619200-1638622800@kdvsfoundation.org
SUMMARY:KdVS Connect - Grandparents Support Group
DESCRIPTION:Join us December 4\, 2021 at 12:00 pm EST for a KdVS Connect just for all the Kool grandparents! This event is a virtual event\, held through Zoom\, so don’t forget to register!
URL:https://kdvsfoundation.org/event/kdvs-connect-grandparents-support-group/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20211120T120000
DTEND;TZID=America/Detroit:20211120T130000
DTSTAMP:20260608T195223
CREATED:20210912T150612Z
LAST-MODIFIED:20211119T163433Z
UID:13331-1637409600-1637413200@kdvsfoundation.org
SUMMARY:KdVS Connect - Epilepsy Discussion and Support
DESCRIPTION:Join KdVS Connect’s monthly Zoom call to discuss all things epilepsy! Approximately 50% of individuals diagnosed with Koolen-de Vries Syndrome are also diagnosed with epilepsy. On November 20\, 2021 at 12:00 pm EST\, parents are invited to share their child’s epilepsy journey and learn from the experiences of other families. Get support\, give support! \nWhat is KdVS Connect? KdVS Connect is a free monthly Zoom call to allow Koolen-de Vries Syndrome families to come together virtually\, to share their stories and to give and receive support. Each month the discussion topic will change!
URL:https://kdvsfoundation.org/event/kdvs-connect-epilepsy-discussion-and-support/
ATTACH;FMTTYPE=image/png:https://kdvsfoundation.org/wp-content/uploads/2021/10/CONNECT-SERIES_plain-square-e1637339475535.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20211010T200000
DTEND;TZID=America/Detroit:20211010T210000
DTSTAMP:20260608T195223
CREATED:20210912T145848Z
LAST-MODIFIED:20210912T151654Z
UID:13328-1633896000-1633899600@kdvsfoundation.org
SUMMARY:KdVS Connect - Emotional Support Group
DESCRIPTION:Join us October 10\, 2021 at 8 pm EST for KdVS Connect.  This month’s zoom call is an Emotional Support Group. Topics to discuss will include: What has been hardest about being a KDVS parent? How do you cope? \nWhat is KdVS Connect? KdVS Connect is a free monthly Zoom call to allow Koolen-de Vries Syndrome families to come together virtually\, to share their stories and to give and receive support. Each month the discussion topic will change!
URL:https://kdvsfoundation.org/event/kdvs-connect-emotional-support-group/
ATTACH;FMTTYPE=image/png:https://kdvsfoundation.org/wp-content/uploads/2021/09/KdVS-Connect-Emotional-Support_FBTwitter.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20210919T200000
DTEND;TZID=America/Detroit:20210919T210000
DTSTAMP:20260608T195223
CREATED:20210818T184535Z
LAST-MODIFIED:20210912T151625Z
UID:13261-1632081600-1632085200@kdvsfoundation.org
SUMMARY:KdVS Connect - Behavioral Challenges
DESCRIPTION:Calling all KdVS caregivers! Our zoom topic of the month is “Behavior Challenges\, Anxieties\, Phobias\, and Repetitive Behaviors”. What has been challenging and how have you handled it? Register through the zoom link below to meet with other KdVS caregivers on September 19 from 8-9 pm EDT.  \nWhat is KdVS Connect? KdVS Connect is a free monthly Zoom call to allow Koolen-de Vries Syndrome families to come together virtually\, to share their stories and to give and receive support. Each month the discussion topic will change!
URL:https://kdvsfoundation.org/event/behavioralchallenges/
ATTACH;FMTTYPE=image/png:https://kdvsfoundation.org/wp-content/uploads/2021/08/KdVS-Connect-Behavior-Challenges_FBTwitter.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20210822T200000
DTEND;TZID=America/Detroit:20210822T210000
DTSTAMP:20260608T195223
CREATED:20210818T180358Z
LAST-MODIFIED:20210818T183528Z
UID:13258-1629662400-1629666000@kdvsfoundation.org
SUMMARY:KdVS Zoom Happy Hour
DESCRIPTION:Join us Sunday\, August 22\, 2021 from 8-9 pm EDT for a virtual happy hour! Register using the link and come ready to visit other families.
URL:https://kdvsfoundation.org/event/kdvs-zoom-happy-hour/
ATTACH;FMTTYPE=image/png:https://kdvsfoundation.org/wp-content/uploads/2021/08/KdVS-Zoom-Happy-Hour_FBTwitter-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210717
DTEND;VALUE=DATE:20210918
DTSTAMP:20260608T195223
CREATED:20210717T183607Z
LAST-MODIFIED:20210722T114846Z
UID:13187-1626480000-1631923199@kdvsfoundation.org
SUMMARY:Kool Kampaign 2021
DESCRIPTION:The Koolen-de Vries Syndrome Foundation is proud to sponsor the 2021 Kool Kampaign for Research. 100% of the donations received will be used to fund KdVS research projects. We are using an online peer-to-peer fundraising platform that we are asking families to share with their friends (via email\, social media\, etc). Money can be raised through a variety of means…just by sharing your fundraising page\, but also through small events like lemonade (or maybe kool-aid?!) stands\, restaurant give-backs\, bake sale\, car wash\, birthday parties\, races\, etc. The ideas are limitless! \nA huge thank you to Selena Stagner and Gary Nelson\, Kool grandparents\, for pledging to match every dollar donated up to $50\,000!!! All donations received between July 17 – September 17\, 2021 will be allocated for research. \nPlease join our Kool Kampaign facebook page to ask questions\, generate ideas\, and to cheer the Kampaign on! \nJoin us in fundraising using the GiveLively platform. Check it out! Need some help setting up your fundraising page? Here are step-by-step instructions!
URL:https://kdvsfoundation.org/event/kool-kampaign-2021/
ATTACH;FMTTYPE=image/jpeg:https://kdvsfoundation.org/wp-content/uploads/2021/07/koolkampaign.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210714
DTEND;VALUE=DATE:20210717
DTSTAMP:20260608T195223
CREATED:20200116T020233Z
LAST-MODIFIED:20210601T170245Z
UID:9518-1626220800-1626479999@kdvsfoundation.org
SUMMARY:2021 VIRTUAL KdVS Patient Advocacy Summit
DESCRIPTION:[vc_row][vc_column][vc_btn title=”Register today!” color=”danger” size=”lg” align=”center” css_animation=”lightSpeedIn” link=”url:https%3A%2F%2Fcvent.me%2FA3dyk1|target:_blank”][vc_message color=”info”] \nClick on the registration button above to browse the agenda and speakers and to register! \n[/vc_message][/vc_column][/vc_row][vc_row][vc_column width=”2/3″ css=”.vc_custom_1579280894011{margin-right: 0px !important;border-top-width: 0px !important;border-right-width: 0px !important;border-bottom-width: 0px !important;border-left-width: 0px !important;padding-top: 20px !important;padding-right: 70px !important;padding-bottom: 20px !important;padding-left: 20px !important;border-left-color: #adadad !important;border-right-color: #adadad !important;border-top-color: #adadad !important;border-bottom-color: #adadad !important;}”] What is the Patient Advocacy Summit?  In 2017\, Koolen-de Vries Syndrome Foundation hosted the first KdVS Patient Advocacy Summit in Memphis\, TN. The goal of the event was to bring families and doctors together to network\, learn and socialize. The Summit\, which is held every two years\, was held in Park City\, Utah in 2019. Due to Covid\, in 2021 we are hosting a virtual event!!   This event promises to be exciting! Prepare for a KOOL experience with Koolen-de Vries Syndrome Foundation and the exceptional KdVS community. Speakers\, live Q&A sessions and networking opportunities are all included in the schedule.  [/vc_column][vc_column width=”1/3″ css=”.vc_custom_1579231199113{border-top-width: 5px !important;border-right-width: 5px !important;border-bottom-width: 5px !important;border-left-width: 5px !important;padding-bottom: 20px !important;background-color: #65bf6f !important;border-left-color: #00bf16 !important;border-left-style: solid !important;border-right-color: #00bf16 !important;border-right-style: solid !important;border-top-color: #00bf16 !important;border-top-style: solid !important;border-bottom-color: #00bf16 !important;border-bottom-style: solid !important;border-radius: 3px !important;}”] Summit Countdown [/vc_column][/vc_row][vc_row][vc_column] What's next?!  Everyone's excited! Everyone has questions! Get answers to the questions below and MORE by downloading our most up-to-date Frequently Asked Questions. [vc_gutenberg] \n\nWhen can I register for the Patient Advocacy Summit?\nHow much will registration be?\nWhat is the schedule?\nWill recordings be available to view?\n\n[/vc_gutenberg][vc_btn title=”FAQ Download” color=”warning” size=”lg” align=”left” link=”url:https%3A%2F%2Fkdvsfoundation.org%2Fwp-content%2Fuploads%2F2021%2F04%2FFAQ-Virtual-2021.pdf|target:_blank”][/vc_column][/vc_row][vc_row][vc_column] Join the conversation  Continue to check the website for updates over the upcoming months but also join us on Facebook! Connect with others interested in attending\, ask questions and get excited!  [vc_btn title=”Send me to the Facebook Group!” color=”warning” size=”lg” align=”left” link=”url:https%3A%2F%2Fwww.facebook.com%2Fgroups%2FKdVSPAS%2F||target:%20_blank|”][/vc_column][/vc_row][vc_row][vc_column][/vc_column][/vc_row]
URL:https://kdvsfoundation.org/event/2021-kdvs-patient-advocacy-summit/
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BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20210625T110000
DTEND;TZID=America/Detroit:20210625T120000
DTSTAMP:20260608T195223
CREATED:20210609T120906Z
LAST-MODIFIED:20210609T121726Z
UID:13076-1624618800-1624622400@kdvsfoundation.org
SUMMARY:Webinar with Dr. de Vries
DESCRIPTION:Coming up on June 25th at 11am EDT\, don’t miss a conversation with Dr. Bert de Vries\, clinical geneticist from The Netherlands\, and member of the KdVS Foundation Medical Advisory Board. He will be sharing information about the current research into KdVS individuals. Register here:  
URL:https://kdvsfoundation.org/event/webinar-with-dr-de-vries/
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BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20210523T170000
DTEND;TZID=America/Detroit:20210523T180000
DTSTAMP:20260608T195223
CREATED:20210514T145851Z
LAST-MODIFIED:20210518T122522Z
UID:12976-1621789200-1621792800@kdvsfoundation.org
SUMMARY:Family Zoom Meet Up
DESCRIPTION:Join us for a virtual meet up of Kool families on May 23rd\, 2021 at 5 pm ET. \nWe had a great time on our first Zoom meeting and families attended from all over the world. Attendees will be divided into smaller break-out rooms to allow easier networking. \nWe would love to meet you!
URL:https://kdvsfoundation.org/event/family-zoom-meet-up/
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