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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:20260428T041926
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/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20241005T090000
DTEND;TZID=UTC:20241005T140000
DTSTAMP:20260428T041926
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/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241010T130000
DTEND;TZID=UTC:20241010T140000
DTSTAMP:20260428T041926
CREATED:20240131T024733Z
LAST-MODIFIED:20240131T024733Z
UID:7563-1728565200-1728568800@www.cdlsusa.org
SUMMARY:Parent University: THE MYRIAD OF RESIDENTIAL OPTIONS – WHAT AND WHERE ARE THEY?
DESCRIPTION:Let’s hear more from people who have creative scenarios – DIY\, Campus\, Group Homes\, Independent Living. Come to this class prepared for the homework you need to do. How do you get comfortable with even starting? Listen and learn from those who have been successful in setting up and finding a solution that worked best for them. \nRegister now
URL:https://www.cdlsusa.org/event/parent-university-the-myriad-of-residential-options-what-and-where-are-they/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241013
DTEND;VALUE=DATE:20241014
DTSTAMP:20260428T041926
CREATED:20240927T005300Z
LAST-MODIFIED:20240927T005300Z
UID:8079-1728777600-1728863999@www.cdlsusa.org
SUMMARY:Walk for Will and Hope
DESCRIPTION:The Walk for Will & Hope is returning to Stony Creek Metropark\, 4300 Main Park Drive\, Shelby Township\, on Sunday\, October 13. \nThis event is a wonderful opportunity for community members to come together for a leisurely\, untimed two-mile walk to raise awareness for Cornelia de Lange Syndrome (CdLS). \nAll proceeds from the walk will support the CdLS Foundation\, a Connecticut-based nonprofit organization that assists families and individuals affected by this rare genetic disorder. The foundation provides crucial resources\, support\, and advocacy to improve the lives of those living with CdLS. \nWe encourage everyone to participate and contribute to this meaningful cause. Whether you walk\, donate\, or simply spread the word\, your involvement makes a difference. \nJoin us in making strides for Will\, Hope\, and everyone impacted by CdLS. \nIf you are unable to attend but would like to donate\, visit: https://bit.ly/WillandHope2024
URL:https://www.cdlsusa.org/event/walk-for-will-and-hope/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241013
DTEND;VALUE=DATE:20241014
DTSTAMP:20260428T041926
CREATED:20240130T190413Z
LAST-MODIFIED:20240503T194920Z
UID:7549-1728777600-1728863999@www.cdlsusa.org
SUMMARY:2024 Bank of America Chicago Marathon
DESCRIPTION:Many runners say that running has changed their lives.  Team CdLS runners say that they changed the lives of others.  Join the Cornelia de Lange Syndrome (CdLS) Foundation at the world-renowned Bank of America Chicago Marathon on Sunday\, October 13\, 2024. We are so excited to announce that we have an amazing team of 23 athletes this year!! Please support this fantastic team by donating here. \nRunning not your thing\, another way to support the team is to sign up for Curb Crew! \n \n  \n  \n 
URL:https://www.cdlsusa.org/event/2024-bank-of-america-chicago-marathon/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241014
DTEND;VALUE=DATE:20241015
DTSTAMP:20260428T041926
CREATED:20240603T183357Z
LAST-MODIFIED:20240729T222243Z
UID:7784-1728864000-1728950399@www.cdlsusa.org
SUMMARY:2024 MCWP & PLM Amber Gaines Memorial Golf Classic
DESCRIPTION:The Amber Gaines Memorial Golf Classic is scheduled for Monday\, October 14th in St. Louis\, MO. Registration and lunch begin at 11am with a 12:30pm shotgun start\, followed by cocktails\, dinner and prizes at 5:30pm. \nThis long-standing Missouri golf outing is one of the CdLS Foundation’s largest fundraisers. MCWP & PLM’s 36th Annual Amber Gaines Memorial Golf Classic is slated for Monday\, October 14th at the Tapawingo National Golf Club. Participants will enjoy 18 holes of golf\, brunch\, dinner\, and an opportunity to win both skill and door prizes.\n\n\nFor more information and how to register visit the event website.
URL:https://www.cdlsusa.org/event/2024-mcwp-plm-amber-gaines-memorial-golf-classic/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241019
DTEND;VALUE=DATE:20241020
DTSTAMP:20260428T041926
CREATED:20240729T213251Z
LAST-MODIFIED:20240729T213251Z
UID:7886-1729296000-1729382399@www.cdlsusa.org
SUMMARY:Team CdLS Baltimore Running Festival
DESCRIPTION:Team CdLS members will surely have a unique and memorable experience as we tour every city corner and raise $15\,000 for the CdLS Foundation. Join us as we run or walk and enjoy the scenic view of Charm City’s famous landmarks. For more information contact Lisa Schroeder at 860.899.1227.
URL:https://www.cdlsusa.org/event/team-cdls-baltimore-running-festival/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241024T200000
DTEND;TZID=UTC:20241024T210000
DTSTAMP:20260428T041926
CREATED:20240809T192213Z
LAST-MODIFIED:20240809T192213Z
UID:7962-1729800000-1729803600@www.cdlsusa.org
SUMMARY:Courageous Parent Network: Balancing Knowledge with Wisdom while Navigating Life with a Child with a Serious Neurological Condition
DESCRIPTION:Neurological diseases are often complex\, and life\, including decision-making\, can be hard to navigate in the face of uncertainty about how the future may unfold. Join us for a discussion of how parents of children with neurological conditions can feel empowered to impact the things under their control\, mitigate risk\, and feel grounded in their family values.\n\nFeaturing Dr. Lauren Treat and several experienced parents.\n\nLauren Treat\, MD is a child neurologist who has special training in caring for individuals with life-limiting and life-altering diseases. She participates in both general neurology and pediatric palliative care clinics\, working with families to balance the impact of disease and treatments with overall quality of life. Her focus is on helping individuals with serious illness live as well as possible for as long as possible.\n\nRegister Here\n\nThis event will take place on Thursday\, October 24th at 8:00 pm ET (7:00 pm CT\, 6:00 pm MT\, 5:00 pm PT).
URL:https://www.cdlsusa.org/event/courageous-parent-network-balancing-knowledge-with-wisdom-while-navigating-life-with-a-child-with-a-serious-neurological-condition/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241026T190000
DTEND;TZID=UTC:20241026T210000
DTSTAMP:20260428T041926
CREATED:20240614T221730Z
LAST-MODIFIED:20241017T171312Z
UID:7800-1729969200-1729976400@www.cdlsusa.org
SUMMARY:Bulls and Barrels Series - Trunk or Treat
DESCRIPTION:Saddle up and join us ……\n\nAt Carters Arena in Chiefland\, FL\, we will have some Halloween-themed rodeo fun while raising awareness and funds for the CdLS Foundation. Come dressed in your favorite costume and enjoy some treats. There will be a costume contest during intermission.\nThe Carter family has been in the rodeo business for years and their hearts felt the need to give to the CdLS Foundation the best way we know how by putting on a Bulls and Barrels family fun event! We will be putting on a 5-event buckle series\, and a portion of all proceeds will go directly to the CdLS Foundation. The guest of honor at the rodeo will be little cowboy Gunner Carter. Gunner was born on January 9\, 2021\, a month early. He was in NICU for 3 ½ months\, and he was diagnosed with CdLS\, and our life was forever changed. Gunner is now 3 ½ years old and fed by a feeding tube. Gunner does not walk\, but he just started to get around with his specially-made wheelchair!!!! Gunner is deaf and nonverbal\, but he loves to blow bubbles!!!\n\n\n\nA little about the event and its history: Gunner’s grandfather Eugene Carter III raises bucking bulls and has traveled all over the southern states to different rodeos and bull rides for 40 plus years.  Gunner’s father\, Cole Carter rode bulls and still does on occasion\, but he mainly fights the bulls now.  There are always 2 bullfighters in the arena and if a bull rider gets hung up and needs help the other the other bullfighter will go to the rescue to help them and pray no one gets hurt! The Carter family is happy to be a part of something that will help a Foundation so close to their heart!\n\n\nEntry fee:  $10 for adults $5 for Students and 6 and under are free.\n\nView event flyer\n\n\nIf you cannot attend but would like to donate to Bulls and Barrels!
URL:https://www.cdlsusa.org/event/bulls-and-barrels-series-3/
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