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DTSTART;VALUE=DATE:20190228
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SUMMARY:Rare Disease Day
DESCRIPTION:
URL:https://kdvsfoundation.org/event/rare-disease-day/
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DTSTART;VALUE=DATE:20180917
DTEND;VALUE=DATE:20181018
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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
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