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X-WR-CALNAME:CdLS Foundation
X-ORIGINAL-URL:https://www.cdlsusa.org
X-WR-CALDESC:Events for CdLS Foundation
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DTSTART:20230101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20241005
DTEND;VALUE=DATE:20241006
DTSTAMP:20260525T043421
CREATED:20240927T205946Z
LAST-MODIFIED:20240927T210213Z
UID:8081-1728086400-1728172799@www.cdlsusa.org
SUMMARY:Aubrie's Army
DESCRIPTION:Our daughter Aubrie Schilling was diagnosed with Cornelia de Lange Syndrome last year at 15 months old through genetic testing at Nationwide Children’s Hospital in Columbus\, Ohio. CdLS is a rare genetic spectrum disorder that causes a broad range of potential physical\, cognitive\, and medical challenges. After this surprising diagnosis\, we contacted the CdLS Foundation\, which quickly became our main resource for guidance and educational information. Since then\, our lives have changed in many ways\, but through the uncertainty of a new diagnosis\, we found a community within the CdLS Foundation. We are thankful for the help this organization has provided to our family and their ongoing support as we continue to navigate this challenging journey. \nWe are also grateful to our family\, friends\, and sponsors for supporting this fundraising event for Aubrie’s Army. In our first year\, we raised over $15\,000. We hope that this gathering will continue to raise awareness about Cornelia de Lange Syndrome\, bring together families traversing through a similar journey\, and generate funds to empower the CdLS Foundation\, a 501(c)(3) nonprofit organization\, in its mission of providing indispensable services and resources! \nWe look forward to growing this event each year to continue to advocate for sweet Aubrie\, the CdLS Foundation\, and all those affected by Cornelia de Lange Syndrome. Thank you for your continued support! \nCan’t attend but still want to support? Click here to donate to Aubrie’s Army.
URL:https://www.cdlsusa.org/event/aubries-army/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/09/Aubries-Army-.png
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BEGIN:VEVENT
DTSTART;TZID=UTC:20241005T090000
DTEND;TZID=UTC:20241005T140000
DTSTAMP:20260525T043421
CREATED:20240626T232654Z
LAST-MODIFIED:20240628T002505Z
UID:7815-1728118800-1728136800@www.cdlsusa.org
SUMMARY:WI Road Race
DESCRIPTION:Lace up your …. And get ready to walk\, run and have fun while supporting the CdLS Foundation. \nMeet Zachary Isaiah Guran! He is 3 years old and was born with a rare syndrome called Cornelia de Lange Syndrome. Zach is an incredibly resilient kid. He consistently deals with some sort of discomfort daily. He struggles with hearing\, and he is non-verbal which makes communication and caring for Zach very complicated. Some of his biggest challenges include feeding\, swallowing\, digestive discomfort\, gaining weight (failure to thrive)\, low muscle tone\, severe acid reflux\, small hands\, limbs\, and feet\, a weakened immune system\, and several developmental delays. My wife and I have learned how to manage Zach’s needs\, but we still don’t always get it right and are constantly learning new ways to help him as time goes on. It has been a difficult journey to say the least filled with unpredictable twists\, medical mysteries\, and scary moments. With that said\, being his parents has been equally as rewarding. \nTo read more about Zach’s journey and Registration Information  \nLocation:\nMenomonee Park\nW220 N7884\, Town Line Rd\nMenomonee Falls\, WI US 53051
URL:https://www.cdlsusa.org/event/wi-road-race/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2024/06/Zach-Photo-scaled.jpg
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