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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:20220623T200000
DTEND;TZID=America/Detroit:20220623T200000
DTSTAMP:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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:20260609T132138
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/
ATTACH;FMTTYPE=image/jpeg:https://kdvsfoundation.org/wp-content/uploads/2021/04/KDVS-Virtual-Summit-logo-2021-FINAL-e1617309182968.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20210625T110000
DTEND;TZID=America/Detroit:20210625T120000
DTSTAMP:20260609T132138
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/
ATTACH;FMTTYPE=image/jpeg:https://kdvsfoundation.org/wp-content/uploads/2021/06/BertdeVries_small2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20210523T170000
DTEND;TZID=America/Detroit:20210523T180000
DTSTAMP:20260609T132138
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/
ATTACH;FMTTYPE=image/png:https://kdvsfoundation.org/wp-content/uploads/2021/05/KdVS-Parent-Zoom-Button_Website-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20210513T130000
DTEND;TZID=America/Detroit:20210513T140000
DTSTAMP:20260609T132138
CREATED:20210511T122708Z
LAST-MODIFIED:20210511T122708Z
UID:12960-1620910800-1620914400@kdvsfoundation.org
SUMMARY:Webinar with Dan Morreale
DESCRIPTION:On May 13th at 1:00 PM ET\, the Koolen-de Vries Syndrome Foundation will be hosting a webinar with Special Education teacher and Kool Dad Dan Morreale. Dan will be discussing Individual Education Plans (IEPs) and planning for a successful school year. If you have a question to ask Dan\, you may submit it directly within the webinar registration page or email us at ashley@kdvsfoundation.org. We will answer questions as time allows. \nRegistration link below!
URL:https://kdvsfoundation.org/event/webinar-with-dan-morreale/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20210430T120000
DTEND;TZID=America/Detroit:20210430T130000
DTSTAMP:20260609T132138
CREATED:20210413T134703Z
LAST-MODIFIED:20210415T020807Z
UID:12900-1619784000-1619787600@kdvsfoundation.org
SUMMARY:Webinar with Dr. Koolen
DESCRIPTION:On April 30th at 12:00 PM ET\, the Koolen-de Vries Syndrome Foundation will be hosting a webinar with Dr. David Koolen. If you have a question to ask Dr. Koolen\, you may submit it directly within the webinar registration page or email us at ashley@kdvsfoundation.org. We will answer questions as time allows. \nRegistration link below! \n 
URL:https://kdvsfoundation.org/event/webinar-with-dr-koolen/
ATTACH;FMTTYPE=image/jpeg:https://kdvsfoundation.org/wp-content/uploads/2021/04/Koolen_headshot-e1618452359450.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20210215T100000
DTEND;TZID=America/Detroit:20210215T110000
DTSTAMP:20260609T132138
CREATED:20210201T040125Z
LAST-MODIFIED:20210201T040125Z
UID:12737-1613383200-1613386800@kdvsfoundation.org
SUMMARY:Webinar with Dr. Ken Myers
DESCRIPTION:More details and registration to come. \nFebruary 10\, 2021 at 10 am EST – join Koolen-de Vries Syndrome’s Kaci Fisher as she and Dr. Ken Myers\, pediatric epileptologist\, discuss epilepsy and KdVS.
URL:https://kdvsfoundation.org/event/webinar-with-dr-ken-myers/
ATTACH;FMTTYPE=image/jpeg:https://kdvsfoundation.org/wp-content/uploads/2019/12/KDVS_2019-254-e1621122424939.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20201206T180000
DTEND;TZID=America/Detroit:20201206T190000
DTSTAMP:20260609T132138
CREATED:20201128T210822Z
LAST-MODIFIED:20201128T211701Z
UID:12445-1607277600-1607281200@kdvsfoundation.org
SUMMARY:Dr. Angela Morgan Webinar
DESCRIPTION:On Sunday\, December 6th at 6 pm EST\, Koolen-de Vries Syndrome Foundation will be hosting a webinar with Dr. Morgan where she will be sharing information about current research in speech therapy and communication resources for KdVS individuals. \nHave a question to ask Dr. Morgan? Submit it directly within the webinar registration page or email us at ashley@kdvsfoundation.org by 12 PM EST on Saturday\, December 5. We will answer questions as time allows. \nDr. Angela Morgan leads the Speech and Language group at the Murdoch Children’s Research Institute and is Professor-Director of Speech Pathology at the University of Melbourne. \nIn recent years\, Angela has developed a passion for studying speech and language in children with rare genetic syndromes to optimize clinical outcomes and to improve prognostic counseling for families of affected children. \n 
URL:https://kdvsfoundation.org/event/dr-angela-morgan-webinar/
ATTACH;FMTTYPE=image/jpeg:https://kdvsfoundation.org/wp-content/uploads/2020/11/ANGELA-MORGAN2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20201017T120000
DTEND;TZID=America/Detroit:20201017T124500
DTSTAMP:20260609T132138
CREATED:20200928T005856Z
LAST-MODIFIED:20200928T005856Z
UID:12152-1602936000-1602938700@kdvsfoundation.org
SUMMARY:Family Yoga Fundraiser
DESCRIPTION:Charlotte Pop-Up Yoga is hosting a family-friendly yoga event! This 30-minute practice is ideal for families with children ages 4-10\, but anyone and everyone will enjoy this fun flow! No yoga experience necessary. At the end we will discuss tips for home practice with kids and registration will include a Kids Yoga Home Sequence PDF and access to our Kids Yoga Playlist!\n\nAll proceeds will be donated to the Koolen-de Vries Syndrome Foundation! CPY Co-Owner Christina daughter was diagnosed with Koolen-de Vries Syndrome in 2019.\n\nRegistration will close 1hr prior to the event when the Zoom link is emailed out. Get a ticket for your family now HERE!
URL:https://kdvsfoundation.org/event/family-yoga-fundraiser/
ATTACH;FMTTYPE=image/jpeg:https://kdvsfoundation.org/wp-content/uploads/2020/09/charlotte-pop-up-yoga.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201017
DTEND;VALUE=DATE:20201118
DTSTAMP:20260609T132138
CREATED:20200927T204632Z
LAST-MODIFIED:20200927T205636Z
UID:12149-1602892800-1605657599@kdvsfoundation.org
SUMMARY:2020 KdVS Triathlon
DESCRIPTION:Raise awareness for Koolen-de Vries Syndrome and show your support for all of our hard-working friends living with KdVS! \nJoin the Cooper Family and Koolen-de Vries Syndrome Foundation in our 2020 “Tri” to be Kool Virtual Triathlon! This is our fifth annual Triathlon and this year all proceeds from the event will benefit KdVS Research projects. \nThe triathlon can be completed from anywhere around the world between October 17 and November 17. Required distances are uniquely set (1.7 mile swim\, 21 mile run\, and 31 mile bike) in order to promote awareness of Koolen-de Vries Syndrome (KdVS). Distances can be broken down at your convenience or can be completed at once; you have one month to complete the events! After your purchase\, please join the event Facebook Page (Tri to be Kool: Virtual Triathlon) for more details and to finish your sign up! \nNot a swimmer? Don’t have a bike? That’s just fine! While our event is geared towards completing our unique triathlon\, we want anyone and everyone to participate! We encourage you to use the event to challenge yourself and put in some hard work to show your support of our determined Kool friends. Choose the workout type that matches your abilities (for example\, run/bike/run\, or bike 17 & 21 & 31 miles\, etc.) and go out and raise some awareness! \nYou’ll receive a Koolen-de Vries Syndrome awareness bracelet and a t-shirt at the end of the event\, as well as a bib to print and display during your workouts (take pictures and post to help spread awareness) and access to the Facebook group for support.
URL:https://kdvsfoundation.org/event/2020-kdvs-triathlon/
CATEGORIES:Tri to Be Kool - Virtual Triathlon
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20200714T200000
DTEND;TZID=America/Detroit:20200714T203000
DTSTAMP:20260609T132138
CREATED:20200710T212315Z
LAST-MODIFIED:20200711T005040Z
UID:11473-1594756800-1594758600@kdvsfoundation.org
SUMMARY:2020 Kool Kampaign Virtual Meeting
DESCRIPTION:In 2019\, the Koolen-de Vries Syndrome Foundation community teamed up to raise over $85\,000 during the Kool Kampaign for Research. We blew past our $60\,000 goal! \nOn July 17\, 2020 – Koolen-de Vries Syndrome Awareness Day – we are kicking off the 2020 Kool Kampaign for Research. You might be surprised how easy it is to reach out to your family\, friends and social media contacts to ask them to join us in raising money for research. \nJoin us on July 14\, 2020 at 8:00 PM (ET) for a Zoom call and learn about our Kool Kampaign and how you can get involved! Registration is limited to 100. \nOnce you have RSVP’d\, Zoom meeting log-in information will be emailed to you.
URL:https://kdvsfoundation.org/event/2020-kool-kampaign-virtual-meeting/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191017
DTEND;VALUE=DATE:20191118
DTSTAMP:20260609T132138
CREATED:20191009T021116Z
LAST-MODIFIED:20191029T013953Z
UID:8892-1571270400-1574035199@kdvsfoundation.org
SUMMARY:2019 KdVS Triathlon
DESCRIPTION:Raise awareness for Koolen-de Vries Syndrome and show your support for all of our hard-working friends living with KdVS! \n**T-shirts are being ordered and registration has closed for the 2019 event. Our athletes are all hard at work logging miles! \nJoin Koolen-de Vries Syndrome Foundation in our 2019 “Tri” to be Kool Virtual Triathlon! This is our fourth annual Triathlon and this year all proceeds from the event will benefit a current KdVS Research Project investigating the syndrome on a cellular level. \nThe triathlon that can be completed from anywhere around the world between October 17 and November 17. Required distances are uniquely set (1.7 mile swim\, 21 mile run\, and 31 mile bike) in order to promote awareness of Koolen-de Vries Syndrome (KdVS). Distances can be broken down at your convenience or can be completed at once; you have one month to complete the events! After your purchase\, please join the event Facebook Page (Tri to be Kool: Virtual Triathlon) for more details and to finish your sign up! \nNot a swimmer? Don’t have a bike? That’s just fine! While our event is geared towards completing our unique triathlon\, we want anyone and everyone to participate! We encourage you to use the event to challenge yourself and put in some hard work to show your support of our determined Kool friends. Choose the workout type that matches your abilities (for example\, run/bike/run\, or bike 17 & 21 & 31 miles\, etc.) and go out and raise some awareness! \nYou’ll receive a Koolen-de Vries Syndrome awareness bracelet and a t-shirt at the end of the event\, as well as a bib to print and display during your workouts (take pictures and post to help spread awareness) and access to the Facebook group for support.
URL:https://kdvsfoundation.org/event/2019-kdvs-triathlon/
CATEGORIES:Tri to Be Kool - Virtual Triathlon
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190717
DTEND;VALUE=DATE:20190718
DTSTAMP:20260609T132138
CREATED:20190117T213151Z
LAST-MODIFIED:20190218T042946Z
UID:5426-1563321600-1563407999@kdvsfoundation.org
SUMMARY:KdVS Awareness Day
DESCRIPTION:
URL:https://kdvsfoundation.org/event/kdvs-awareness-day/
ATTACH;FMTTYPE=image/jpeg:https://kdvsfoundation.org/wp-content/uploads/2018/06/KDVS-Awareness-Day-5.jpg
END:VEVENT
END:VCALENDAR