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:20170312T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20171105T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20180311T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20181104T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20190310T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20191103T060000 END:STANDARD BEGIN:DAYLIGHT TZOFFSETFROM:-0500 TZOFFSETTO:-0400 TZNAME:EDT DTSTART:20200308T070000 END:DAYLIGHT BEGIN:STANDARD TZOFFSETFROM:-0400 TZOFFSETTO:-0500 TZNAME:EST DTSTART:20201101T060000 END:STANDARD 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 END:VTIMEZONE BEGIN:VEVENT DTSTART;TZID=America/Detroit:20220507T140000 DTEND;TZID=America/Detroit:20220507T150000 DTSTAMP:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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:20260608T195230 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 BEGIN:VEVENT DTSTART;VALUE=DATE:20190627 DTEND;VALUE=DATE:20190630 DTSTAMP:20260608T195230 CREATED:20190117T212100Z LAST-MODIFIED:20190619T052202Z UID:5421-1561593600-1561852799@kdvsfoundation.org SUMMARY:2019 KdVS Patient Advocacy Summit DESCRIPTION:[vc_row][vc_column el_class=”.custom-css-pas”][vc_raw_html]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[/vc_raw_html][/vc_column][/vc_row][vc_row][vc_column width=”2/3″ el_class=”.register-button”][vc_btn title=”Register Now!” style=”3d” size=”lg” align=”center” button_block=”true” link=”url:%23registration-section|||” el_class=”register-btn”][/vc_column][vc_column width=”1/3″ el_class=”countdown-title”][vc_raw_html]JTNDaDMlMjBzdHlsZSUzRCUyMnRleHQtYWxpZ24lM0ElMjBjZW50ZXIlM0IlMjBjb2xvciUzQSUyMCUyM2ZmZiUzQiUyMiUzRVN1bW1pdCUyMENvdW50ZG93biUzQyUyRmgzJTNF[/vc_raw_html][/vc_column][/vc_row][vc_row gap=”10″][vc_column width=”2/3″][vc_column_text] \nWhat is the KdVS Patient Advocacy Summit?\n\nIn 2017\, Koolen-de Vries Syndrome Foundation (KdVSF) presented the first ever Koolen-de Vries Syndrome Patient Advocacy Summit. We are pleased to join forces with hosts Mandy and Aaron Bylund to present the 2019 KdVS Patient Advocacy Summit (“Summit”) in Park City\, Utah on June 27-29\, 2019. Our Events committee is hard at work planning an amazing event. \n\n[/vc_column_text][vc_column_text] \nAgenda\n[/vc_column_text][vc_column_text] \nAgenda is tentative and subject to change. \n[/vc_column_text][vc_tta_tabs active_section=”2″][vc_tta_section title=”June 26″ tab_id=”1549852928012-6768c199-7844″] Wednesday \n \n\n \n \n \n \n \n All Day - Optional Activities\n \n \n \n \n If you are in town we will plan some activities around Park City. Or you can plan your own day exploring Park City and the surrounding country. \n \n \n \n [/vc_tta_section][vc_tta_section title=”June 27″ tab_id=”1549852928037-05df1081-4aed”] Thursday \n \n\n \n \n \n \n \n 8 AM - Doctors meeting at Primary Children’s Hospital\n \n \n \n \n The doctors will have a private meeting with geneticists at Primary Children's Hospital. \n \n \n \n \n \n\n \n \n \n \n \n 6AM - 9AM - Registration & Breakfast- in the conference room and sky bridge lounge\n \n \n \n \n Breakfast casserole\, Oatmeal\, scrambled eggs\, fruit\, muffins\, cereal\, sausage\, juice\, milk & bagles. \n \n \n \n \n \n\n \n \n \n \n \n 9AM - 6PM - A Day at the National Ability Center\n \n \n \n \n All activities donated by the NAC\, learn more about their amazing organization here: https://www.discovernac.org/ *Private lodging rooms on the NAC campus will be provided for individuals who need a sensory break or a nap during the day. \n \n \n \n \n \n\n \n \n \n \n \n 9AM - 9:45AM Welcome & Opening Remarks with NAC team at hotel\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 9:45AM - 10AM Leave hotel and travel to NAC\n \n \n \n \n It's a 15 minute drive to the NAC from the hotel\, but you will need to allow for more time if you are using public transportation. The NAC is currently doing construction on their parking lot\, which limits available parking spaces. They have requested that we carpool as much as possible. \n \n \n \n \n \n\n \n \n \n \n \n 10AM - 4:30PM Activities at NAC:\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n \n \n \n \n \n All KdVS individuals & family members can take part in adapted activities such as a high ropes course\, archery\, rock climbing\, cycling\, mountain biking\, team building\, equestrian assisted learning\, etc. All of these activities are possible thanks to a generous donation from the National Ability Center! \n \n \n \n \n \n\n \n \n \n \n \n 11:30 AM - 1:00PM Kneader's Bakery boxed lunches\n \n \n \n \n Boxed lunches generously donated by Kneaders bakery. Come grab your lunch any time during lunch hours under the sun shelter ramada. \n \n \n \n \n \n\n \n \n \n \n \n 4:30 PM - 5:00PM Travel back to hotel\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 5PM - 8PM Sam Ghavimi's Fiesta Dinner Party\n \n \n \n \n Dinner and the fiesta party are generously donated by KdVS individual Sam Ghavimi. The fiesta includes Mexican food from Cafe Rio\, dancing\, piñatas\, and fun for everyone! If you see Sam give him a high-5 for providing this amazing night! \n \n \n \n [/vc_tta_section][vc_tta_section title=”June 28″ tab_id=”1549853001576-74d8df9d-3460″] Friday \n \n\n \n \n \n \n \n 6AM - 9AM - Breakfast in the conference room and sky bridge lounge\n \n \n \n \n Continental Breakfast- Oatmeal\, scrambled eggs\, fruit\, muffins\, toast\, cereal\, sausage\, apple juice & milk. \n \n \n \n \n \n\n \n \n \n \n \n 8:00 AM - Travel to church building\n \n \n \n \n All lectures and childcare will be held at 2555 Kilby Rd.\, Park City UT. It's about an 8 minute drive. Plan for more time if using public transportation. Please arrive with enough time to get your child settled into childcare before lectures begin at 8:30. \n \n \n \n \n \n\n \n \n \n \n \n 8:30AM - 12:30PM Presentations from Doctors (introduced by a KdVS Teen or Adult)\n \n \n \n \n Childcare will be provided at the church and children will be separated into small groups by age. Age appropriate snacks\, crafts\, toys\, games\, and movies will be provided for all groups. \n \n \n \n \n \n\n \n \n \n \n \n 8:30AM - 9:30AM Bea Moise: The Sibling's Perspective\n \n \n \n \n Mrs. Moise will be holding a workshop for parents to understand challenges and needs of siblings of special needs children. She will also be discussing the specific concerns expressed by KdVS siblings from the Thursday workshop the day before. \n \n \n \n \n \n\n \n \n \n \n \n 9:30AM - 10AM Dr. de Vries: Getting to the Koolen-deVries syndrome: the history and a bit of the future.\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 10:00AM - 10:45AM Dr. Susan Johnson & Dr. Betsy Kanarowski: Sexual Abuse of Young Children with Disabilities: Prevalence\, Prevention\, and Intervention.\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 11:00AM - 12:00PM Dr. Angela Morgan: Communication and feeding development in children with Koolen de Vries Syndrome.\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 12PM - 12:20PM Anouk Verboven: A new approach to identify candidate drugs for Koolen-de Vries syndrome.\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 12:20PM - 12:30PM Q&A\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 12:30PM - 2:00PM Lunch\n \n \n \n \n Pizza provided by Papa John's Pizza. \n \n \n \n \n \n\n \n \n \n \n \n 1:30PM - 3PM Free time/Nap time\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 5PM - 7PM Dinner\, Kool Kid Panel Discussion:\n \n \n \n \n This is the night to let our Kool Kids shine! \n \n \n \n \n \n\n \n \n \n \n \n 7PM - Bedtime Free Time\n \n \n \n \n Socialize\, explore Park City\, or hang out at the pool with other families! \n \n \n \n [/vc_tta_section][vc_tta_section title=”June 29″ tab_id=”1549853014742-74669875-5e64″] Saturday \n \n\n \n \n \n \n \n 6AM - 9AM Breakfast in the conference room and sky bridge lounge\n \n \n \n \n Biscuits & Gravy\, Oatmeal\, cereal\, muffins\, toast\, fruit\, apple juice\, orange juice\, milk \n \n \n \n \n \n\n \n \n \n \n \n 8:30AM - 11:45AM Presentations from Doctors\n \n \n \n \n Doctors introduced with assistance from a KdVS Teen or Adult. Childcare provided in adjacent room \n \n \n \n \n \n\n \n \n \n \n \n 8:30AM - 9:00AM Dr. Koolen: The Clinical Spectrum of KdVS\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 9:00AM - 9:30AM Dr. Nael Nadif Kasri: How we can use stem cells to better understand KdVS and other neurodevelopmental disorders.\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 9:30AM - 10:15AM Dr. Ken Meyer: Seizures in Koolen-de Vries Syndrome\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 10:15AM - 10:35AM Katrin Linda: Cellular and Molecular Mechanisms underlying KdVS\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 10:35AM - 10:45AM Break\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 10:45AM - 11:15AM Q&A with Doctors\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 11:15AM - 12:00PM Panel of Parents with adult & teen KdVS individuals\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 12:15PM Travel to Utah Olympic Park\n \n \n \n \n The address of the Utah Olympic Park is 3419 Olympic Parkway\, Park City. It is a 6 minute drive. Please allow more time for travel if using public transportation. \n \n \n \n \n \n\n \n \n \n \n \n 12:30PM - 2PM Olympic Park Aerial Ski Jumping Show & Lunch\n \n \n \n \n Watch a show of Athletes from both the olympic and the US freestyle ski teams doing aerial jumps at the Utah Olympic Park while enjoying lunch donated by Pauni Island Grill! Box lunches will be served at the lecture venue and can be taken to the Utah Olympic Park. \n \n \n \n \n \n\n \n \n \n \n \n 2PM - 3PM Free time/Nap time\n \n \n \n \n \n \n \n \n \n \n\n \n \n \n \n \n 3PM - 7PM Carnival & Dinner\n \n \n \n \n The carnival will include a splash pad\, bounce houses\, face painting\, carnival games\, Sam’s Dance Party\, a live DJ\, crafts\, prizes\, balloon animals\, cotton candy & snow cone machines\, lots of yummy food\, etc! Most items have been generously donated by friends and family of Utah KdVS families. \n \n \n \n [/vc_tta_section][vc_tta_section title=”June 30″ tab_id=”1549853034161-5ee6bd32-6e5a”] Sunday \n \n\n \n \n \n \n \n 6AM - 9AM Breakfast in the conference room and sky bridge lounge\n \n \n \n \n Sunday isn't an official day of the Summit so we aren't buying breakfast food this day. We will serve any unused breakfast food from earlier in the week. Take your chances eating whatever breakfast food we have\, or check out one the amazing breakfast restaurants in Park City! \n \n \n \n \n \n\n \n \n \n \n \n 8:15AM Travel to SLC\n \n \n \n \n If you are going to the Mormon Tabernacle Choir performance you must be seated by 9:15AM. The drive from Newpark is about 30 minutes. Please allow extra time for travel if you are using public transportation. \n \n \n \n \n \n\n \n \n \n \n \n 9AM - 2PM Mormon Tabernacle Choir & SLC Tour\n \n \n \n \n Drive down the canyon into Salt Lake City to see a performance by the Mormon Tabernacle Choir\, take a tour of Temple Square\, enjoy a picnic at City Creek Park. Because the performance will be broadcast on live TV\, children under the age of 8 will need to view the concert from an adjacent room to minimize audience noise. The Utah KdVS parents & family members are happy to watch your children if you want to see the performance in the main hall. \n \n \n \n [/vc_tta_section][/vc_tta_tabs][/vc_column][vc_column width=”1/3″][vc_column_text] \nDon’t forget to:\n1. Register all members of your party \n\n2. Reserve your hotel \n\n3. Plan your travel arrangements (airline\, rental car\, etc) \n\n4. Get really excited! \n[/vc_column_text][vc_column_text]Goals of the KdVS Summit: \nGoal 1: Provide families with the latest research and expert knowledge of KdVS\, including medical\, education and developmental implications. This knowledge can be life changing and even life saving for the families and patients. \nPark City is a gorgeous city so consider coming a few days early or staying a few days late to complete your family vacation. To help make your stay as affordable as possible\, we are working hard to provide as many meals as possible for all attendees during the three days of the Summit. \nWe hope you can join us! \nGoal 2: Bring doctors\, specialists and researchers together with KdVS families to gather tangible data\, further research\, and assess needs. \nGoal 3: Allow families to socialize and network within a supportive environment. \n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column] Speakers [/vc_column][/vc_row][vc_row gap=”20″ equal_height=”yes”][vc_column width=”1/4″]\n \n \n \n Dr. Bert de Vries Dr. de Vries will be presenting... [vc_toggle title=”More”]Dr. de Vries will be presenting “Getting to the Koolen-deVries syndrome: the history (and a bit of the future).”[/vc_toggle]\n \n Read more about Dr. de Vries\n \n[/vc_column][vc_column width=”1/4″]\n \n \n \n Dr. David Koolen Dr. Koolen will be presenting... [vc_toggle title=”More”]Dr. Koolen will be presenting “What is there to know about KdVs?”.[/vc_toggle]\n \n Read more about Dr. Koolen\n \n[/vc_column][vc_column width=”1/4″]\n \n \n \n Dr. Ken Myers Dr. Myers will be presenting... [vc_toggle title=”More”]Dr. Myers will be presenting on “Seizures in People with KdVS”. Topics will include the usual range of age of onset of seizures\, typical seizure types\, medications that tend to be effective\, and the likelihood of growing out of seizures.[/vc_toggle]\n \n Read more about Dr. Myers\n \n[/vc_column][vc_column width=”1/4″]\n \n \n \n Prof. Angela Morgan Prof. Morgan will be presenting... [vc_toggle title=”More”]Prof. Angela Morgan will be presenting on….[/vc_toggle]\n \n Read more about Prof. Morgan\n \n[/vc_column][/vc_row][vc_row gap=”20″ equal_height=”yes”][vc_column width=”1/4″]\n \n \n \n Dr. Nael Nadif Kasri Dr. Kasri will be presenting... [vc_toggle title=”More”]Dr. Nael Nadif Kasri will be presenting…[/vc_toggle]\n \n Read more about Dr. Kasri\n \n[/vc_column][vc_column width=”1/4″]\n \n \n \n Dr. Susan Johnston Dr. Johnston will be preseting... [vc_toggle title=”More”]Dr. Susan Johnston\, PhD\, is an Associate Professor in the Department of Special Education at the University of Utah and serves as an Associate Dean in the College of Education where she coordinates academic and student affairs.  Susan’s research and scholarly interests include augmentative and alternative communication\, early language and literacy intervention\, and early childhood special education. She has published articles and has delivered state\, national\, and international presentations in these areas.  Susan has been with the University of Utah since 1997. She received her MA and Ph.D. in Speech-Language Pathology from the University of Minnesota in Minneapolis\, MN. Prior to coming to Utah\, Dr. Johnston was an Assistant Professor in the Department of Special Education at Eastern Michigan University in Ypsilanti\, MI.[/vc_toggle][/vc_column][vc_column width=”1/4″]\n \n \n \n Bea Moise Mrs. Moise will be presenting... [vc_toggle title=”More”]Bea Moise will be presenting…. \n  \nBeatrice (Bea) Moise\, M.S.\, BCCS.\, is a Board Certified Cognitive Specialist. She is the creator of A Child Like Mine\,LLC \, a company created for educating parents of children with unique behavioral and learning needs\, while giving them the tools they need to be successful at home. She is a respected and trusted parenting coach and consultant at Southeast Psych in Charlotte\, NC. She serves as a Board of Trustee Member at Palisades Episcopal School  and The Lunch Project. She is a writer for PsychBytes and ShrinkTank\, and her writing has also been featured in Autism Parenting Magazine\, Charlotte Parent\, Carolina Parent. Beatrice is  contributor author inSoutheast Psych’s Guide for Imperfect Parents: A Book Written By Imperfect Therapists. She was featured in a documentary called Look to the Sky an inspiring documentary that takes a look at what is possible for the world and our own lives. \nBea has worked as a Parenting and Behavioral Consultant for years with extensive experience working with parents of children who have a variety of diagnoses such as Autism Spectrum Disorders\, Anxiety Disorder\, Conduct Disorder\, Oppositional Defiant Disorder\, & ADHD. She has trained hundreds of families on Parent Management Training. She has provided parents with tools that are useful. Providing parents with practical techniques and teaching strategies. \nShe has a Bachelor of Science in Psychology\, and also holds a Master of Science in Mental Health Counseling with a specialty of Applied Behavior Analysis from Nova Southeastern University.  She is a member of American Psychological Association & North Carolina Association for Behavior Analysis. Beatrice and her husband\, Rubin Moise\, have 2 children\, Jacob who is awesomely autistic & Abigail who is simply marvelous.[/vc_toggle][/vc_column][vc_column width=”1/4″][/vc_column][/vc_row][vc_row][vc_column] Our Sponsors [/vc_column][/vc_row][vc_row][vc_column][vc_row_inner][vc_column_inner] Diamond Sponsor [/vc_column_inner][/vc_row_inner][vc_row_inner][vc_column_inner][vc_single_image image=”7704″ img_size=”” onclick=”custom_link” img_link_target=”_blank” link=”http://www.godoctorg.com/” el_class=”sponsor-logo”][/vc_column_inner][/vc_row_inner][vc_row_inner][vc_column_inner] Platinum Sponsor [/vc_column_inner][/vc_row_inner][vc_row_inner][vc_column_inner width=”1/4″][vc_single_image image=”7705″ img_size=”” onclick=”custom_link” img_link_target=”_blank” link=”https://www.forceforgood.org” el_class=”sponsor-logo”][/vc_column_inner][vc_column_inner width=”1/4″][vc_single_image image=”7706″ img_size=”” onclick=”custom_link” img_link_target=”_blank” link=”https://discovernac.org/” el_class=”sponsor-logo”][/vc_column_inner][vc_column_inner width=”1/4″][/vc_column_inner][vc_column_inner width=”1/4″][/vc_column_inner][/vc_row_inner][vc_row_inner][vc_column_inner] Gold Sponsor [/vc_column_inner][/vc_row_inner][vc_row_inner][vc_column_inner width=”1/4″][vc_single_image image=”7707″ img_size=”” onclick=”custom_link” img_link_target=”_blank” link=”https://www.greenwichbiosciences.com/” el_class=”sponsor-logo”][/vc_column_inner][vc_column_inner width=”1/4″][vc_single_image image=”7708″ img_size=”” onclick=”custom_link” img_link_target=”_blank” link=”https://globalgenes.org/” el_class=”sponsor-logo”][/vc_column_inner][vc_column_inner width=”1/4″][vc_single_image image=”7709″ img_size=”” onclick=”custom_link” img_link_target=”_blank” link=”https://www.ojtolmastrust.org/” el_class=”sponsor-logo”][/vc_column_inner][vc_column_inner width=”1/4″][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row][vc_column][/vc_column][/vc_row][vc_row][vc_column width=”2/3″] Sponsorship [vc_column_text]The estimated cost for the 2019 KdVS Patient Advocacy Summit is $60\,000. We plan to raise this money through sponsorships\, donations and grants. Every donation is extremely helpful\, no matter the size. There are numerous levels of sponsorship available as well as donation of funds for specific items such as sponsoring a meal\, a speaker or a conference room. \nIf you would like to help us get donations for the event\, you can download the sponsorship packet. You can also reach out to Mandy Bylund if you’d like more information about how to help raise funds for the summit.\nEmail Mandy at:  mandy@kdvsfoundation.org[/vc_column_text][/vc_column][vc_column width=”1/3″][vc_column_text] \nClick Below to Download\n \n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column] Plan Your Trip [vc_raw_html]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[/vc_raw_html][vc_column_text el_class=”.plan-trip”] \n\n\nAll conference sessions and childcare will be held at the host hotel\, Newpark Resort \n\nStandard Room – $119.00 USD/Night\nLuxury Suite – $195.00 USD/Night\n2 Bedroom Suite – $279.00 USD/Night\nTownhouse – $229.00 USD/Night (the furthest townhouses are about a 5 minute walk to the hotel) \n\n  \nBooking Information: \nBy Phone: call 435-649-3600\, extension 2\, and reference group by name KDVS Summit 0619. The group confirmation number is 270590. \n  \nOnline: \nVisit www.newparkresort.com \n\nClick the blue BOOK NOW button in the top right corner of the webpage\nEnter your desired stay dates\nIn the dropdown under the CORPORATE/PROMO field enter the following code: KDVS2019\nClick BOOK NOW and continue \n\n  \nOR follow the direct group booking link: https://gc.synxis.com/rez.aspx?hotel=67229&chain=15564&promo=KDVS2019&arrive=6/24/19 \n  \n*Note: reservations which include dates that fall outside of the groups event dates\, will not be able to book online and should call for assistance booking \nRoom block expires May 27th\, 2019 \nTravel Information: \nFlights should be booked to the Salt Lake City International Airport. Newpark Resort is a 35 min drive from there. (If you live in a city with Allegiant Airlines\, the Provo Airport is a 50 min drive to the hotel\, but tickets would likely be significantly cheaper) \nFor local transit\, Park City offers a free public bus system. Check out http://www.parkcity.org/about-us/transit-bus/ for maps\, schedules\, and more information. \nFor private transit and airport shuttles\, the resort recommends Park City Direct. Contact them at 435-655-3010 to schedule a ride. Uber and Lyft are also reliable options and would likely cost significantly less. \n\n\n\n[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column][/vc_column][/vc_row][vc_row][vc_column] About Park City [vc_single_image image=”5806″ img_size=”full”][vc_column_text el_class=”park-city-description”]You may know Park City as a world-class ski town\, or the home of the Sundance Film Festival. But what you may not know is that Park City is an incredible place to visit in the summer time! \nSurrounded by beautiful mountains\, rivers and lakes\, Park city offers incredible outdoor activities and amazing views. And Park City also features a thriving historical district\, creative community and active culture. \nIf you want to extend your trip in Park City\, there is an endless list of things you can do and there will be lots of Kool families to do it with! Hover over or click on the images below to get more ideas![/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width=”1/3″] Outdoor Sports [vc_row_inner][vc_column_inner width=”1/2″][vc_hoverbox image=”5814″ primary_title=”Mountain Biking” hover_title=”Mountain Biking” shape=”square”]Explore hundreds of miles of biking trails or take the ski lifts up and ride down the slopes.[/vc_hoverbox][vc_hoverbox image=”5815″ primary_title=”Horseback Riding” hover_title=”Horseback Riding” shape=”square”]Go on a horseback riding trip in the beautiful Park City mountains.[/vc_hoverbox][/vc_column_inner][vc_column_inner width=”1/2″][vc_hoverbox image=”5817″ primary_title=”Fly Fishing” hover_title=”Fly Fishing” shape=”square”]Visit nearby Provo River for some of the best fly fishing in the country and picturesque Provo Canyon.[/vc_hoverbox][vc_hoverbox image=”5816″ primary_title=”Hiking” hover_title=”Hiking” shape=”square”]Explore hundreds of hiking trails in the Park City area.[/vc_hoverbox][/vc_column_inner][/vc_row_inner][/vc_column][vc_column width=”1/3″] Extreme Fun [vc_row_inner][vc_column_inner width=”1/2″][vc_hoverbox image=”5807″ primary_title=”Alpine Coaster” hover_title=”Alpine Coaster” shape=”square”]Reach speeds over 30 MPH in the coaster\, or try one of two alpine slides in the area.[/vc_hoverbox][vc_hoverbox image=”5809″ primary_title=”Extreme Tubing” hover_title=”Extreme Tubing” shape=”square”]Shoot down the long jump runs at Utah Olympic Park at speeds up to 50 MPH.[/vc_hoverbox][/vc_column_inner][vc_column_inner width=”1/2″][vc_hoverbox image=”5808″ primary_title=”Ziplines” hover_title=”Ziplines” shape=”square”]Try one of the multiple zip line options in Park City or travel 20 minutes south to the ziplines at Sundance Resort.[/vc_hoverbox][vc_hoverbox image=”5811″ primary_title=”Summer Bobsled” hover_title=”Summer Bobsled” shape=”square”]Reach speeds up to 60 MPH on a real bobsled track![/vc_hoverbox][/vc_column_inner][/vc_row_inner][/vc_column][vc_column width=”1/3″] Around Town [vc_row_inner][vc_column_inner width=”1/2″][vc_hoverbox image=”5820″ primary_title=”Park Silly Sunday Market” hover_title=”Park Silly Sunday Market” shape=”square”]Every Sunday in the summer on Main Street enjoy the Park Silly Market. An open air market & street festival with local artwork\, food\, drinks\, live music\, street performers\, a farmers market and much more![/vc_hoverbox][/vc_column_inner][vc_column_inner width=”1/2″][vc_hoverbox image=”5819″ primary_title=”Concerts” hover_title=”Concerts” shape=”square”]Most nights you can find free outdoor concerts in Park City.[/vc_hoverbox][vc_hoverbox image=”5835″ primary_title=”Spot the Banksys” hover_title=”Spot the Banksys” shape=”square”]The famous graffiti artist\, Banksy\, left his mark on the town three times. Go see them all![/vc_hoverbox][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row][vc_column] Shopping & Fun [vc_row_inner][vc_column_inner width=”1/3″][vc_hoverbox image=”5830″ primary_title=”Tanger Outlets” hover_title=”Tanger Outlets” shape=”square”]Shop 100 retailers with amazing prices less than 2 miles from NewPark Resort![/vc_hoverbox][vc_hoverbox image=”5823″ primary_title=”Park City Trolley” hover_title=”Park City Trolley” shape=”square”]Take a stroll down historic Main Street and jump on a free trolley ride. [/vc_hoverbox][/vc_column_inner][vc_column_inner width=”1/3″][vc_hoverbox image=”5833″ primary_title=”Main Street” hover_title=”Main Street” shape=”square”]Enjoy window shopping in historic downtown Park City and see the location of the Sundance Film Festival.[/vc_hoverbox][vc_hoverbox image=”5838″ primary_title=”Electric Rental Bikes” hover_title=”Electric Rental Bikes” shape=”square”]Rent electric bikes on NewPark property\, and other locations. $2.00 for 45 minutes.[/vc_hoverbox][/vc_column_inner][vc_column_inner width=”1/3″][vc_hoverbox image=”5839″ primary_title=”Ski Lifts” hover_title=”Ski Lifts” shape=”square”]There are plenty of ski lifts that run all summer to let you see the beautiful mountains and the city below. [/vc_hoverbox][vc_hoverbox image=”5872″ primary_title=”Utah Olympic Park” hover_title=”Utah Olympic Park” shape=”square”]Explore Olympic History\, watch olympic athletes train and experience a few olympic sports yourself![/vc_hoverbox][/vc_column_inner][/vc_row_inner][/vc_column][/vc_row][vc_row][vc_column][vc_raw_html el_id=”registration-section”]JTNDc3R5bGUlM0UlMEFkaXYlMjNyZWdpc3RyYXRpb24tc2VjdGlvbiUyMCU3Qm1hcmdpbi1ib3R0b20lM0ElMjAxMTVweCUyMCUyMWltcG9ydGFudCUzQiU3RCUwQSUzQyUyRnN0eWxlJTNF[/vc_raw_html][/vc_column][/vc_row][vc_row][vc_column] Registration [vc_column_text]Please fill out the registration form\, then purchase tickets below! \nIf you are willing we would love to add your picture to the photo directory! We will mail out a printed directory with everyone’s names and photos to help everyone get to know each other![/vc_column_text][contact-form-7 id=”5629″][/vc_column][/vc_row][vc_row][vc_column][vc_raw_html]JTNDc3R5bGUlM0UlMEEud2MtdGFicy13cmFwcGVyJTJDJTIwLnByb2R1Y3RfbWV0YSUyMCU3QmRpc3BsYXklM0ElMjBub25lJTIwJTIxaW1wb3J0YW50JTNCJTdEJTBBLndvb2NvbW1lcmNlLXByb2R1Y3QtZGV0YWlsc19fc2hvcnQtZGVzY3JpcHRpb24lMjBwJTIwJTdCZm9udC1zaXplJTNBJTIwMjBweCUyMCUyMWltcG9ydGFudCUzQiU3RCUwQSUzQyUyRnN0eWxlJTNF[/vc_raw_html][/vc_column][/vc_row] URL:https://kdvsfoundation.org/event/2019-kdvs-patient-advocacy-summit/ LOCATION:Newpark Resort\, Park City\, Utah\, 1476 Newpark Boulevard\, Park City\, UT\, 84098\, United States ATTACH;FMTTYPE=image/jpeg:https://kdvsfoundation.org/wp-content/uploads/2019/01/kdvs-summit_eventpage-cover.jpg END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20190228 DTEND;VALUE=DATE:20190301 DTSTAMP:20260608T195230 CREATED:20190117T212600Z LAST-MODIFIED:20190117T212600Z UID:5424-1551312000-1551398399@kdvsfoundation.org SUMMARY:Rare Disease Day DESCRIPTION: URL:https://kdvsfoundation.org/event/rare-disease-day/ END:VEVENT BEGIN:VEVENT DTSTART;VALUE=DATE:20180917 DTEND;VALUE=DATE:20181018 DTSTAMP:20260608T195230 CREATED:20180417T010452Z LAST-MODIFIED:20181002T144718Z UID:2154-1537142400-1539820799@kdvsfoundation.org SUMMARY:2018 "Tri" to be Kool Virtual Triathlon DESCRIPTION:** T-shirts are being ordered 10/2/2018. You are welcome to join our event between 10/2 and 10/17\, but unfortunately\, we can not guarantee extra t-shirts will be available.**\nJoin Koolen-de Vries Syndrome Foundation in our 2018 “Tri” to be Kool Virtual Triathlon! This is our third annual Triathlon and this year all proceeds from the event will benefit KdVS research. Earlier in 2018\, we raised $50\,000 that has been sent to Dr. Koolen and Dr. de Vries for an ongoing research project involving KdVS at a cellular and molecular level. We are hoping to raise another $10\,000 to fully fund a PhD student to run the day-to-day research for an entire year ($60\,000 USD total). It’s a perfect time to spread awareness about Koolen-de Vries Syndrome and challenge your friends and family to join in the event! \n  \nThe triathlon can be completed from anywhere around the world between September 17 and  October 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) which is caused by a microdeletion at Chromosome 17 at the location 17q21.31 or a mutation of the KANSL1 gene in the same location. 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! \n  \nNot a swimmer? Don’t have a bike? That’s just fine! While the event is geared towards completing this 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! \n  \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/2018-tri-to-be-kool-virtual-triathlon/ CATEGORIES:Tri to Be Kool - Virtual Triathlon ATTACH;FMTTYPE=image/jpeg:https://kdvsfoundation.org/wp-content/uploads/2018/04/2018Tri.jpg END:VEVENT END:VCALENDAR