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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:20240101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250510
DTEND;VALUE=DATE:20251001
DTSTAMP:20260501T082918
CREATED:20250306T233308Z
LAST-MODIFIED:20251121T183936Z
UID:8914-1746835200-1759276799@www.cdlsusa.org
SUMMARY:Champions for CdLS Golf Tournament
DESCRIPTION:We are very grateful to every one of you\, our sponsors\, golfers\, and donors\, whose participation and generosity made our recent golf tournament a heartfelt success. Thanks to your support\, we raised an incredible $6\,200 for the CdLS Foundation. \nYour generosity empowers us to continue serving nearly 4\,000 families across the United States and around the world. With your help\, we will continue to fund vital programs and services to our CdLS community. \nYour participation and contributions are making a tangible difference. Although the event is over your continued support can still have a lasting impact on our community. You can donate here. \nThank you for standing with us\, for caring deeply about the CdLS community\, and for helping us deliver hope\, help\, and connection. \nBecause of your support we will continue to reach out\, provide help and give hope to our CdLS Community.\nEven though the course is closed you can still support this event and the CdLS Foundation by donating here: Donate Now! \nInformation for 2026 will be coming soon. If you would like to host a golf tournament in your community please contact Lisa Schroeder\, Events Manager at lschroeder@cdlsusa.org. \nThank you  \n\nThis event was generously sponsored by:
URL:https://www.cdlsusa.org/event/champions-for-cdls-golf-tournament/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/03/logo-1.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20250510
DTEND;VALUE=DATE:20250511
DTSTAMP:20260501T082918
CREATED:20250507T215531Z
LAST-MODIFIED:20250507T232403Z
UID:9231-1746835200-1746921599@www.cdlsusa.org
SUMMARY:In Full Bloom for Zuri
DESCRIPTION:  \nMeet Zuri\, Our Joyful Bloom!\nZuri is a bright light in our lives\, full of strength\, love\, and a spirit that keeps blooming no matter the season. She lives with Cornelia de Lange Syndrome (CdLS)\, a rare genetic condition that affects her daily life in many ways. But despite the challenges\, Zuri continues to grow\, shine\, and inspire everyone around her. This CdLS Awareness Day\, we’re honoring her journey with our event\, In Full Bloom for Zuri\, a celebration of hope\, growth\, and awareness. \nYour support helps us spread the word about CdLS\, fund resources for families like ours\, and most importantly\, show Zuri that she’s never alone. Plant a seed of support by donating\, sharing\, or simply wearing purple on May 10. Together\, let’s help the world bloom a little brighter for Zuri. \nIf you cannot attend and would still like to donate\, click here.
URL:https://www.cdlsusa.org/event/in-full-bloom-for-zuri/
LOCATION:Chicago\, IL
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/In-Full-Bloom-for-Zuri-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250510
DTEND;VALUE=DATE:20250511
DTSTAMP:20260501T082918
CREATED:20241217T192151Z
LAST-MODIFIED:20250407T200554Z
UID:8587-1746835200-1746921599@www.cdlsusa.org
SUMMARY:International CdLS Awareness Day
DESCRIPTION:International CdLS Awareness Day is observed each year to increase understanding and bring attention to Cornelia de Lange Syndrome (CdLS)\, an often misdiagnosed and little-known genetic condition. This special day serves as an opportunity for families\, advocates\, and healthcare professionals to unite in raising awareness and promoting early diagnosis\, research\, and support for individuals affected by CdLS. Activities include going live on social media\, displaying educational flyers in public spaces\, delivering presentations to civic organizations\, healthcare providers\, and schools\, and engaging with local media through letters\, articles\, and interviews. Many also organize fundraising events\, participate in social media campaigns\, and host community gatherings to foster connections and provide resources for families. By coming together on CdLS Awareness Day\, supporters help create a more informed and compassionate world for those living with this rare condition.\n\n\n\n\nFor more information\, contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/international-cdls-awareness-day-2/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250510
DTEND;VALUE=DATE:20250511
DTSTAMP:20260501T082918
CREATED:20250507T233440Z
LAST-MODIFIED:20250507T233709Z
UID:9235-1746835200-1746921599@www.cdlsusa.org
SUMMARY:CdLS Awareness Day 6th Annual Parade
DESCRIPTION:Join Us for the 6th Annual CdLS Awareness Parade & Celebration! 📍 Central Falls📅 May 10\, 2025🕘 11:00 a.m.\nWe’re proud to host our 6th annual event in honor of Samira\, our beautiful sister who was born with Cornelia de Lange Syndrome (CdLS). This day is all about raising awareness for CdLS and celebrating children with special needs in our community! \nWhat to Expect: \n\nParade through Central Falls\nSoccer & Kickball Tournaments\nMusic\, Games & Family Fun\nFree Ice Cream for Kids!\nDelicious Food (free with your purple event shirt)\nHandmade Awareness T-Shirts are available for purchase to help everyone show support!\n\nWe’ve met other amazing children in the area with CdLS who attend every year\, and together\, we make this day one to remember. Though we’re not an official fundraiser yet\, this grassroots effort is fueled by love\, community\, and the determination of one family to make a difference. \n💡 Want to Help?We’re always open to support\, advice\, or partnerships to grow this event and make it even better in the years to come. Every bit of help means the world to us. \nCome out\, wear purple\, and show your support. Let’s celebrate\, raise awareness\, and uplift our incredible CdLS community together! 💜 \nUnable to attend\, but still want to support? Click here to donate.
URL:https://www.cdlsusa.org/event/cdls-awareness-day-6th-annual-parade/
LOCATION:Macomber Stadium\, 964 High Street\, RI\, 02863\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/CdLS-Awareness-Day-Parade.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250515T200000
DTEND;TZID=UTC:20250515T210000
DTSTAMP:20260501T082918
CREATED:20250131T202950Z
LAST-MODIFIED:20250131T203040Z
UID:8779-1747339200-1747342800@www.cdlsusa.org
SUMMARY:Building a Path to Support: Navigating the Stages of Financial Planning Webinar
DESCRIPTION:This event will help families understand the numerous stages to be considered while developing a special needs master plan for their loved one experiencing a disability. \nPresented by Mary McDirmid with All Needs Planning; top considerations they hear and help their clients with include: \ngovernment benefits\nfunding their lifetime\ntax efficiency\ninsurance\nhousing\nemployment\ntrusts\nABLE\nestate planning\nAll Needs Planning believes that their clients are very capable of doing this planning\, the emotional aspect cannot be overstated as the biggest culprit in procrastinating. Understanding how math\, emotion and habits intersect is their specialty. \nThis event will take place on Thursday\, May 15th at 8:00 pm ET (7:00 pm CT\, 6:00 pm MT\, 5:00 pm PT). \nRegister here
URL:https://www.cdlsusa.org/event/building-a-path-to-support-navigating-the-stages-of-financial-planning-webinar/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250523T120000
DTEND;TZID=UTC:20250523T130000
DTSTAMP:20260501T082918
CREATED:20250521T193153Z
LAST-MODIFIED:20250521T193153Z
UID:9285-1748001600-1748005200@www.cdlsusa.org
SUMMARY:Updates to Cuts to Medicaid Webinar
DESCRIPTION:Join the Arc of Illinois for an important webinar on Medicaid and its vital services. \nThe webinar will be held on Friday\, May 23\, from 12 – 1 p.m. ET. \nThey will discuss the proposed federal funding cuts and how families and individuals with disabilities can advocate against these changes. \nYour voice matters—let’s make a difference together! \nDon’t miss this opportunity to learn and engage. \nRegister here.
URL:https://www.cdlsusa.org/event/updates-to-cuts-to-medicaid-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/Medicaid-Webinar.png
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