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PRODID:-//Yaya Foundation - ECPv6.15.20//NONSGML v1.0//EN
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X-WR-CALNAME:Yaya Foundation
X-ORIGINAL-URL:https://yayafoundation4hl.org
X-WR-CALDESC:Events for Yaya Foundation
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:UTC
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TZOFFSETFROM:+0000
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DTSTART:20210101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20221113T130000
DTEND;TZID=UTC:20221113T140000
DTSTAMP:20260412T154450
CREATED:20220506T132806Z
LAST-MODIFIED:20220506T133144Z
UID:1824-1668344400-1668348000@yayafoundation4hl.org
SUMMARY:Zoom Hangout for #4HLFamilies
DESCRIPTION:The Yaya Foundation hosts bi-monthly calls for anyone and everyone impacted by 4H or POLR3-related Leukodystrophy. \nAlong with keeping the community up-to-speed on the work we’re doing at the Yaya Foundation\, we also strive to organize valueable and engaging content for our family calls. This year\, the Yaya Foundation is considering several unique meeting topics\, including visits from expert guests. If you have additional ideas or want to be involved in the planning\, please contact info@yayafoundation4hl.org. \nThe #4HLFamilies Zoom Hangouts will be held on the following Sundays at 2:00 pm ET / 11:00 am PT: \n\nFebruary 6th\nMarch 27th\nMay 22nd\nJuly 17th\nSeptember 18th\nNovember 13th\n\nRegistration is required and a Zoom link will be emailed to you following registration. \nPlease send any questions to info@yayafoundation4hl.org. \nRegister To Attend
URL:https://yayafoundation4hl.org/event/zoom-hangout-for-4hlfamilies-4/
LOCATION:Via Zoom Link
ATTACH;FMTTYPE=image/jpeg:https://yayafoundation4hl.org/wp-content/uploads/2022/05/30048-Yaya-Foundation-Facebook-Event-Header-Families-Call1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220918T130000
DTEND;TZID=UTC:20220918T140000
DTSTAMP:20260412T154450
CREATED:20220506T132638Z
LAST-MODIFIED:20220506T133117Z
UID:1822-1663506000-1663509600@yayafoundation4hl.org
SUMMARY:Zoom Hangout for #4HLFamilies
DESCRIPTION:The Yaya Foundation hosts bi-monthly calls for anyone and everyone impacted by 4H or POLR3-related Leukodystrophy. \nAlong with keeping the community up-to-speed on the work we’re doing at the Yaya Foundation\, we also strive to organize valueable and engaging content for our family calls. This year\, the Yaya Foundation is considering several unique meeting topics\, including visits from expert guests. If you have additional ideas or want to be involved in the planning\, please contact info@yayafoundation4hl.org. \nThe #4HLFamilies Zoom Hangouts will be held on the following Sundays at 2:00 pm ET / 11:00 am PT: \n\nFebruary 6th\nMarch 27th\nMay 22nd\nJuly 17th\nSeptember 18th\nNovember 13th\n\nRegistration is required and a Zoom link will be emailed to you following registration. \nPlease send any questions to info@yayafoundation4hl.org. \nRegister To Attend
URL:https://yayafoundation4hl.org/event/zoom-hangout-for-4hlfamilies-3/
LOCATION:Via Zoom Link
ATTACH;FMTTYPE=image/jpeg:https://yayafoundation4hl.org/wp-content/uploads/2022/05/30048-Yaya-Foundation-Facebook-Event-Header-Families-Call1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220730T083000
DTEND;TZID=UTC:20220730T200000
DTSTAMP:20260412T154450
CREATED:20220509T161433Z
LAST-MODIFIED:20220608T161019Z
UID:1755-1659169800-1659211200@yayafoundation4hl.org
SUMMARY:Fore for 4H Golf Event
DESCRIPTION:HELPING FAMILIES THAT ARE AFFECTED BY 4H LEUKODYSTROPHY\n\n\n\nIn its seventh year\, Fore for 4H provides participants with a day of golf\, food\, and fun in Ohio. It was established in 2014 by the Triptow Family: Kurt\, Debbie\, and their daughter\, Jill.\nJill enjoying the Fore for 4H event!\nThe following is a note from the Triptow family: \nOur objective is to raise money for research to help families that are affected by 4H Syndrome – an extremely rare form of Leukodystrophy. It is important that we raise money and awareness because this disease is extremely rare. There are just over 300 cases diagnosed worldwide. It is very difficult to receive federal grants and receive backing from large corporations when there are not enough patients. We need to do this on our own – until we receive the recognition necessary to make a difference. \nTHANK YOU ALL for making the 2021 Fore For 4H Golf outing a great success!  Thanks to YOU we were able to raise $25\,000 throughout 2021\, including miscellaneous donations\, the Wahoodlum Duckette Draft\, and the failed Clambake! The combined effort made 2021 a GREAT comeback year! \nSAVE THE DATE! The Fore For 4H Golf Outing 2022 for Saturday\, July 30th.  I am hopeful we can fill the course once again with 144 golfers. Last year Debbie and Jill were unable to be a part of the golf outing because Jill was in the hospital. Hopefully both of them will be able to make appearances this year! \nRegister for the event and follow us on Facebook and on Twitter for event updates: @h_for4 and @yaya4HL. \nWe look forward to seeing you again! \n\nPast Photos from this fun event!
URL:https://yayafoundation4hl.org/event/fore-for-4h-golf/
LOCATION:Creekwood Golf Course\, 9691 Reed Road\, Columbia Station\, Ohio\, 44028\, United States
ATTACH;FMTTYPE=image/jpeg:https://yayafoundation4hl.org/wp-content/uploads/2021/09/GettyImages-1188004109.jpeg
ORGANIZER;CN="Fore for 4H":MAILTO:ForeFor4H@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220717T130000
DTEND;TZID=UTC:20220717T140000
DTSTAMP:20260412T154450
CREATED:20220506T132213Z
LAST-MODIFIED:20220506T133234Z
UID:1817-1658062800-1658066400@yayafoundation4hl.org
SUMMARY:Zoom Hangout for #4HLFamilies
DESCRIPTION:The Yaya Foundation hosts bi-monthly calls for anyone and everyone impacted by 4H or POLR3-related Leukodystrophy. \nAlong with keeping the community up-to-speed on the work we’re doing at the Yaya Foundation\, we also strive to organize valueable and engaging content for our family calls. This year\, the Yaya Foundation is considering several unique meeting topics\, including visits from expert guests. If you have additional ideas or want to be involved in the planning\, please contact info@yayafoundation4hl.org. \nThe #4HLFamilies Zoom Hangouts will be held on the following Sundays at 2:00 pm ET / 11:00 am PT: \n\nFebruary 6th\nMarch 27th\nMay 22nd\nJuly 17th\nSeptember 18th\nNovember 13th\n\nRegistration is required and a Zoom link will be emailed to you following registration. \nPlease send any questions to info@yayafoundation4hl.org. We look forward to seeing you! \nRegister To Attend
URL:https://yayafoundation4hl.org/event/zoom-hangout-for-4hlfamilies-2/
LOCATION:Via Zoom Link
ATTACH;FMTTYPE=image/jpeg:https://yayafoundation4hl.org/wp-content/uploads/2022/05/30048-Yaya-Foundation-Facebook-Event-Header-Families-Call1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220625T090000
DTEND;TZID=UTC:20220625T123000
DTSTAMP:20260412T154450
CREATED:20220608T153158Z
LAST-MODIFIED:20220608T153406Z
UID:1976-1656147600-1656160200@yayafoundation4hl.org
SUMMARY:YAYA FOUNDATION @ ULF CONFERENCE
DESCRIPTION:Join us at the Eaglewood Resort and Spa \, Chicago\, Illinois.\nSessions are available in-person and virtually.\nYaya Foundation is honored to sponsor registration fees for 4H families.\nUse the code yaya4h at checkout. \n\nAbout The Conference\nThe Yaya Foundation is proud to be a sponsor of the ULF Conference\, as well as to provide a 4HL specific agenda for this event. The ULF Family Conference is an annual event where affected families can access the world’s top leukodystrophy physicians and researchers – outside of the restrictions of insurance and the hospital setting. Held over two days\, the Conference aims to provide the latest scientific information to keep families informed on advances in the field but also guide families on topics that will improve their overall quality of life while living with a leukodystrophy. The Conference is an invaluable experience geared toward the whole family: Affected individuals\, parents and caregivers\, spouses\, siblings\, extended family\, friends\, and anyone else in their support network. \nRegistration covers entry to the event whether virtual or in-person. For in-person attendees\, the eight meals provided at the venue are also included in registration. Attendees are responsible for securing their hotel room(s) and making their own travel arrangements. Scholarships are available to families who are newly diagnosed or are in financial need. \nREGISTER \n 
URL:https://yayafoundation4hl.org/event/yaya-foundation-in-partnership-with-ulf-conference/
LOCATION:Eaglewood Resort\, Chicago IL\, 140 Nordic Road\, Itaska\, 60143\, United States
ATTACH;FMTTYPE=image/jpeg:https://yayafoundation4hl.org/wp-content/uploads/2022/03/admin-ajax.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220617
DTEND;VALUE=DATE:20220620
DTSTAMP:20260412T154450
CREATED:20220509T235656Z
LAST-MODIFIED:20220509T235656Z
UID:1844-1655424000-1655683199@yayafoundation4hl.org
SUMMARY:Ride for a Cure
DESCRIPTION:Ride for A Cure: Florida Motorcycle Ride Fundraiser\nGrandfather Jim St. John is taking to the road on his motorcycle to raise awareness for 4H Leukodystrophy in honor of his granddaughters\, Jamie and Layla.\nA message from Jim about his Ride for a Cure: \nHere’s your chance to finally tell me where to go! This time you will be choosing my stops for me.\nAll amounts of donations welcomed and appreciated.\n\nWith a minimum donation of $100\, I will go anywhere you want me to within the state of Florida!\nWant me to go by your childhood home and take a pic\, how about your favorite beach\, buy a beer at your favorite brewery (mine is Wops Hops shocking I know)\, take a pic with your family member or friend??? Wherever it is I will go there and do a Facebook Live spot from that location.\n\nMy goal this year is to raise $15\,000\, so start sending in your requests and making those donations.\n100% of all funds will go directly to Yaya Foundation for 4H Leukodystrophy to support the research and development for treatments and a cure.\n\nI will start the ride Friday June 17th and return home Sunday evening June 19th.\n\nPlease go directly Yaya Foundation to make your donations!
URL:https://yayafoundation4hl.org/event/ride-for-a-cure/
LOCATION:Florida\, United States
ATTACH;FMTTYPE=image/jpeg:https://yayafoundation4hl.org/wp-content/uploads/2022/05/Layla-and-Jamie.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220522T130000
DTEND;TZID=UTC:20220522T140000
DTSTAMP:20260412T154450
CREATED:20220506T130624Z
LAST-MODIFIED:20220506T133318Z
UID:1812-1653224400-1653228000@yayafoundation4hl.org
SUMMARY:Zoom Hangout for #4HLFamilies
DESCRIPTION:The Yaya Foundation hosts bi-monthly calls for anyone and everyone impacted by 4H or POLR3-related Leukodystrophy. \nAlong with keeping the community up-to-speed on the work we’re doing at the Yaya Foundation\, we also strive to organize valueable and engaging content for our family calls. This year\, the Yaya Foundation is considering several unique meeting topics\, including visits from expert guests. If you have additional ideas or want to be involved in the planning\, please contact info@yayafoundation4hl.org. \nThe #4HLFamilies Zoom Hangouts will be held on the following Sundays at 2:00 pm ET / 11:00 am PT: \n\nFebruary 6th\nMarch 27th\nMay 22nd\nJuly 17th\nSeptember 18th\nNovember 13th\n\nRegistration is required and a Zoom link will be emailed to you following registration. \nPlease send any questions to info@yayafoundation4hl.org. We look forward to seeing you! \nRegister To Attend
URL:https://yayafoundation4hl.org/event/zoom-hangout-for-4hlfamilies/
LOCATION:Via Zoom Link
ATTACH;FMTTYPE=image/jpeg:https://yayafoundation4hl.org/wp-content/uploads/2022/05/30048-Yaya-Foundation-Facebook-Event-Header-Families-Call1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220513T110000
DTEND;TZID=UTC:20220513T120000
DTSTAMP:20260412T154450
CREATED:20220506T125309Z
LAST-MODIFIED:20220506T125607Z
UID:1800-1652439600-1652443200@yayafoundation4hl.org
SUMMARY:Data Collection Info Session
DESCRIPTION:Want to learn more about the 4H Data Collection Program? Join us for an info session on Friday\, May 13th co-hosted by the Yaya Foundation and Rare-X\, the data collection platform. \nWhether you’re 1 of 60 families already enrolled or are thinking about participating\, we look forward to answering all of your questions – big and small – and sharing what we’ve learned about trends that have showed up in the data so far! We’ll discuss the purpose and benefits of data collection\, cover topics related to data privacy\, and explain the importance of partnering with Rare-X. \nRegister To Attend
URL:https://yayafoundation4hl.org/event/data-collection-info-session/
LOCATION:Via Zoom Link
ATTACH;FMTTYPE=image/png:https://yayafoundation4hl.org/wp-content/uploads/2022/05/standard_2022_March_DCPmap.png
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BEGIN:VEVENT
DTSTART;TZID=UTC:20220430T090000
DTEND;TZID=UTC:20220430T103000
DTSTAMP:20260412T154450
CREATED:20220323T133154Z
LAST-MODIFIED:20220323T133714Z
UID:1719-1651309200-1651314600@yayafoundation4hl.org
SUMMARY:Jamie and Layla Ride for Life
DESCRIPTION:A Family Ride to End 4H Leukodystrophy\n\nOak Tree area to Green Springs and Back on Spring-to-Spring Trail\nOpen to All Ages / Water and Snacks Provided / Games for the Kids\n\n\nMeet my two granddaughters\, Jamie Rae and Layla Grace Alacan who are battling 4H Leukodystrophy. Their mother Courtney describes them as her warrior babies\, and I could not agree more. I hope by doing this event many more people will join the fight against this terrible neurological disorder.  –Eddie Alacan \n4H leukodystrophy is a genetic disorder that causes a lack of myelin\, the fatty white substance that covers and protects nerve cells in the central nervous system.  The missing myelin causes problems with balance and walking\, tremors\, speech difficulties\, uncontrolled muscle contractions\, stiff muscles\, and restricted movements. Other symptoms include abnormal tooth development\, atypical puberty\, short stature\, and near sightedness. \n  \n  \n  \nTHERE IS NO CURE.  HELP US FUND RESEARCH! \nAdults $25 and $100 in pledges from supporters \nChildren are free \nRegister at ULF.org or on-site April 30 \nLearn more by contacting Eddie Alacan \nalacan62@gmail.com or 386-960-4393 \n  \nSupported by the United Leukodystrophy Foundation
URL:https://yayafoundation4hl.org/event/jamie-and-layla-ride-for-life/
LOCATION:Spring-To-Spring Trail\, DeBary\, FL 32713\, Spring-To-Spring Trail\, DeBary\, FL 32713\, DeBary\, FL\, 32713\, United States
ATTACH;FMTTYPE=image/jpeg:https://yayafoundation4hl.org/wp-content/uploads/2022/03/GettyImages-615744688.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220422
DTEND;VALUE=DATE:20220423
DTSTAMP:20260412T154450
CREATED:20220608T154329Z
LAST-MODIFIED:20220608T154416Z
UID:1984-1650585600-1650671999@yayafoundation4hl.org
SUMMARY:Virtual Care & Disease Management Day
DESCRIPTION:Virtual Care & Disease Management Day\nApril 22\, 2022\nAll meeting sessions will be virtually \n\nPlease join us for this free virtual conference\nThe Yaya Foundation is proud to announce its upcoming 4H Leukodystrophy Virtual Care & Disease Management Day on Friday\, April 22\, 2022. \nBased on input from many individuals and families affected by 4H Leukodystrophy\, conference topics will focus on Supportive Care & Disease Management. The Foundation collaborated closely with leading 4H Clinician Scientist\, Dr Genevieve Bernard\, to identify speakers and finalize the agenda. \nThe benefits of attending this free\, virtual conference include: \n\nReceiving expert care guidance from clinicians who have cared for patients with 4H leukodystrophy\nThe ability to participate in Q&A with the clinicians\nMultiple opportunities to connect with other families in smaller virtual setting\n\nWe look forward to bringing individuals and families affected by 4H together with leading specialty clinicians who have cared for 4H patients. Our goal is to safely include as many families as possible. To achieve that\, the Virtual Care & Disease Management Day will be delivered virtually. The conference agenda will also allow opportunities for the 4H community to connect. \nPlease register today! We think this will be an amazing day together! \n  \nThank You To Our Sponsors!\n 
URL:https://yayafoundation4hl.org/event/virtual-care-disease-management-day/
ATTACH;FMTTYPE=image/jpeg:https://yayafoundation4hl.org/wp-content/uploads/2022/02/YaYa-Lobby-v4.jpg
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