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X-ORIGINAL-URL:https://www.cdlsusa.org
X-WR-CALDESC:Events for CdLS Foundation
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240919T200000
DTEND;TZID=UTC:20240919T210000
DTSTAMP:20260403T174456
CREATED:20240809T191905Z
LAST-MODIFIED:20240809T191905Z
UID:7961-1726776000-1726779600@www.cdlsusa.org
SUMMARY:Courage Parent Network: This Shared Journey: Get to Know the Network
DESCRIPTION:Come meet the faces BEHIND Courageous Parents Network\, as well as some of the parents and providers IN the Network. (That includes you\, btw.)\n\nSpend an hour with us talking about our shared journey and participating in an open-ended conversation touching upon topics that stretch across this caregiving journey.\n\nAs CPN celebrates our 10th anniversary\, our staff has been reflecting on how important our connections are\, how much they build our capacity to do the things we do at CPN\, and how sharing simply makes most things better.\n\nIt will be wonderful to see and hear from you In the Room. We look forward to sharing an evening with you.\n\nRegister Here\n\nThis event will take place on Thursday\, September 19th at 8:00 pm ET (7:00 pm CT\, 6:00 pm MT\, 5:00 pm PT).
URL:https://www.cdlsusa.org/event/courage-parent-network-this-shared-journey-get-to-know-the-network/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/08/Sept-ITR-This-Shared-Journey-300x300-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240928T190000
DTEND;TZID=UTC:20240928T210000
DTSTAMP:20260403T174456
CREATED:20240617T201934Z
LAST-MODIFIED:20240626T223911Z
UID:7799-1727550000-1727557200@www.cdlsusa.org
SUMMARY:Bulls and Barrels Series
DESCRIPTION:Saddle up and join us ……\n\nAt Carters Arena in Chiefland\, FL we have some rodeo fun while raising awareness and funds for the CdLS Foundation. The 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 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 he is feed by 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-5/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/06/bandb.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241005
DTEND;VALUE=DATE:20241006
DTSTAMP:20260403T174456
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241005T090000
DTEND;TZID=UTC:20241005T140000
DTSTAMP:20260403T174456
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241010T130000
DTEND;TZID=UTC:20241010T140000
DTSTAMP:20260403T174456
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/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241013
DTEND;VALUE=DATE:20241014
DTSTAMP:20260403T174456
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/09/walkforwillandhope.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241013
DTEND;VALUE=DATE:20241014
DTSTAMP:20260403T174456
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/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2024/01/cm23_071-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241014
DTEND;VALUE=DATE:20241015
DTSTAMP:20260403T174456
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/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2022/11/tapawingo-golf-course-with-bridge.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241019
DTEND;VALUE=DATE:20241020
DTSTAMP:20260403T174456
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/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2023/03/IMG-0861.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241024T200000
DTEND;TZID=UTC:20241024T210000
DTSTAMP:20260403T174456
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/08/Oct-ITR-Balancing-Knowledge-with-Wisdom-300x300-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241026T190000
DTEND;TZID=UTC:20241026T210000
DTSTAMP:20260403T174456
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/06/bandb.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241102T083000
DTEND;TZID=UTC:20241102T150000
DTSTAMP:20260403T174456
CREATED:20230829T232443Z
LAST-MODIFIED:20230829T232443Z
UID:7308-1730536200-1730559600@www.cdlsusa.org
SUMMARY:Adolescent and Adult Multidisciplinary Clinic
DESCRIPTION:This Foundation-managed\, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore\, MD. Foundation Medical Director Antonie Kline\, M.D.\, Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC\, has led these clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. \nPresentations on the following topics from CdLS Clinical Advisory Board members: Behavioral Psychology\, Child Psychiatry\, Gastroenterology\, Genetics\, Gynecology\, Neurology\, Pediatric Ophthalmology\, Speech Pathology. Live Q&A with CdLS Clinical Advisory Board Members. \nFor more information on the clinic or to secure your spot\, contact Whitney Rinaldi or call 860.676.8166.
URL:https://www.cdlsusa.org/event/adolescent-and-adult-multidisciplinary-clinic-2/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241112T200000
DTEND;TZID=UTC:20241112T210000
DTSTAMP:20260403T174456
CREATED:20241112T011014Z
LAST-MODIFIED:20241112T011014Z
UID:8464-1731441600-1731445200@www.cdlsusa.org
SUMMARY:Missouri Sibling Leadership Network Virtual Social Group Meetup
DESCRIPTION:Mark your calendars for this upcoming virtual social group meetup on November 12th! During this meetup we connect with siblings of individuals with disabilities. This is a great opportunity to meet other siblings around the state of Missouri.
URL:https://www.cdlsusa.org/event/missouri-sibling-leadership-network-virtual-social-group-meetup/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2024/11/462529992_122221431842009023_1442093370838542419_n.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241114T120000
DTEND;TZID=UTC:20241114T130000
DTSTAMP:20260403T174456
CREATED:20241112T004649Z
LAST-MODIFIED:20241112T004649Z
UID:8458-1731585600-1731589200@www.cdlsusa.org
SUMMARY:Virtual Workshop: Power of Attorney Workshop with WisconSibs and Fox Valley Advance Care Planning Partnership
DESCRIPTION:Join us as we sit down with Bobbie Thompson\, Executive Director of the Fox Valley Advance Care Planning Partnership. In this interview-style event\, we will help you learn more about why getting a Power of Attorney establish (for everyone) is so important. This event will be follow up by an in-person workshop in February where you will be able to work on your POA plan! \nRegister here! \n 
URL:https://www.cdlsusa.org/event/virtual-workshop-power-of-attorney-workshop-with-wisconsibs-and-fox-valley-advance-care-planning-partnership/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/11/Virtual-Workshop.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241114T130000
DTEND;TZID=UTC:20241114T160000
DTSTAMP:20260403T174456
CREATED:20240131T025024Z
LAST-MODIFIED:20240131T025024Z
UID:7564-1731589200-1731600000@www.cdlsusa.org
SUMMARY:Parent University: THE STRESS OF NORMAL LIFE\, ADD IN THE HOLIDAYS\, FUTURE WORRIES AND HOW DO YOU COPE
DESCRIPTION:Let’s listen to some more professionals that will give us coping mechanisms to help. Send your questions to us in advance to get some good advice shared with the group. \nRegister now
URL:https://www.cdlsusa.org/event/parent-university-the-stress-of-normal-life-add-in-the-holidays-future-worries-and-how-do-you-cope/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241116T190000
DTEND;TZID=UTC:20241116T210000
DTSTAMP:20260403T174456
CREATED:20240614T221850Z
LAST-MODIFIED:20241107T224618Z
UID:7801-1731783600-1731790800@www.cdlsusa.org
SUMMARY:Bulls and Barrels Series
DESCRIPTION:Saddle up and join us! Only two Bulls and Barrles Rodeos left and you dont want to miss the fun and excitement. Hollywood Harris will be there to entertain the crowd. Come out\, have some fun and support the CdLS community.\n\n\n\nAt Carters Arena in Chiefland\, FL we have some rodeo fun while raising awareness and funds for the CdLS Foundation. The 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 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 he is feed by 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-4/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/06/bandb.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241120T190000
DTEND;TZID=UTC:20241120T200000
DTSTAMP:20260403T174456
CREATED:20241112T005241Z
LAST-MODIFIED:20241112T005426Z
UID:8461-1732129200-1732132800@www.cdlsusa.org
SUMMARY:How I Managed My Brother's Mental Health Crisis
DESCRIPTION:Discover how one sibling mastered the intricacies of the healthcare and service system to support her brother. \nRegister here!
URL:https://www.cdlsusa.org/event/how-i-managed-my-brothers-mental-health-crisis/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/11/How-I-managed-my-brothers-mental-health-crisis.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241120T191500
DTEND;TZID=UTC:20241120T201500
DTSTAMP:20260403T174456
CREATED:20241112T010415Z
LAST-MODIFIED:20241112T010508Z
UID:8463-1732130100-1732133700@www.cdlsusa.org
SUMMARY:Wisconsibsread Book Club
DESCRIPTION:The WisconSibsREAD book club will meet for their monthly book discussion\, laughter\, and sibling-to-sibling bonding on Wednesday\, November 20th. This month’s book is Rosemary: The Hidden Kennedy Daughter by Kate Clifford Larson. This book chronicles the life of Rosemary Kennedy\, exploring her struggles with intellectual disabilities and the impact of her family’s decisions on her fate. **Reminder: everyone is welcome to attend Book Club – even if you didn’t read the book. \nAdd this link to your calendar to attend.\nhttps://us02web.zoom.us/j/89043702457?pwd=OHZIM0pkKzM3Q2UyWHpuV2RCL2RyUT09#success
URL:https://www.cdlsusa.org/event/wisconsibsread-book-club/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/11/Virtual-Workshop.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241212T130000
DTEND;TZID=UTC:20241212T140000
DTSTAMP:20260403T174456
CREATED:20240131T025511Z
LAST-MODIFIED:20240131T025536Z
UID:7566-1734008400-1734012000@www.cdlsusa.org
SUMMARY:Parent University: LEARNING HOW TO DEAL WITH “THE GAP”
DESCRIPTION:“The Gap” is our desire to get to PERFECTION versus recognizing HOW FAR WE HAVE COME! We will use some exercises to walk out of the class with a positive feeling about our SUCCESSES! And…a reality check of what we should work toward in 2025. \nRegister now
URL:https://www.cdlsusa.org/event/parent-university-learning-how-to-deal-with-the-gap/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20241224T080000
DTEND;TZID=UTC:20241224T170000
DTSTAMP:20260403T174456
CREATED:20241112T011759Z
LAST-MODIFIED:20241112T011759Z
UID:8466-1735027200-1735059600@www.cdlsusa.org
SUMMARY:December Virtual Meet Up\, Casual "Pop-In"
DESCRIPTION:Save the date for our monthly virtual Meet Up which is of a more casual style focused on connection\, collaboration and support. Bring your questions or life experience to the table around the Holidays! \nCaliforniaSibs is the official California state chapter of the nationwide Sibling Leadership Network (SLN). Our Mission is to partner with Sibs (sisters and brothers of those with special needs) here in California in finding and creating information\, and to provide community support and advocacy tools to advance issues important to them and their entire families. \nThe Northern California branch hosts informational and supportive MeetUps bi-monthly\, typically in Oakland\, over Sunday brunch with a special guest speaker. In the past\, we have welcomed licensed psychologist Dr. Virginia Bassi and Sheraden Nicolau\, Bay Area General Manager with the State Council on Development Disabilities (SCDD). \nThe Southern California branch is centrally located out of Los Angeles\, with bi-monthly brunch MeetUps hosted in local restaurants around Downtown Los Angeles\, the Westside LA\, the San Fernando Valley\, and Pasadena/San Gabriel Valley. A little bit more casual\, these brunches act as a fun place for people to connect\, laugh\, support\, and bond over what makes us unique. \n 
URL:https://www.cdlsusa.org/event/december-virtual-meet-up-casual-pop-in/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/11/CaliforniaSibs-Adult-Sisters-and-Brothers-of-those-with-IDD.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250125T190000
DTEND;TZID=UTC:20250125T210000
DTSTAMP:20260403T174456
CREATED:20241122T191852Z
LAST-MODIFIED:20241217T191453Z
UID:8504-1737831600-1737838800@www.cdlsusa.org
SUMMARY:Bulls and Barrels Series
DESCRIPTION:This is it! The final Bulls and Barrels Event of the seriesPrize Buckles will be awarded\, and Hollywood Harris will be there to entertain the crowd– you don’t want to miss this! \nAdults $10\, Students $5 and 5 and under are free \nAt Carters Arena in Chiefland\, FL. Have some rodeo fun while raising awareness and funds for theCdLS Foundation\, one last time. The Carter family has been in the rodeo business for years and theirhearts felt the need to give to the CdLS Foundation the best way we know how by putting on a Bullsand Barrels family fun event! This is the final event in 5 event buckle series and buckles will beawarded.Gunner’s grandfather Eugene Carter III raises bucking bulls and has traveled all over the southernstates to different rodeos and bull rides for 40 plus years. Gunner’s father\, Cole Carter rode bulls andstill does on occasion\, but he mainly fights the bulls now. There are always 2 bullfighters in the arenaand if a bull rider gets hung up and needs help the other the other bullfighter will go to the rescue tohelp them and pray no one gets hurt! The Carter family is happy to be a part of something that willhelp a Foundation so close to their heart! A portion of all proceeds will go directly to the CdLSFoundation.The guest of honor is little cowboy Gunner Carter. Gunner was born 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 4 years old\, and he is fed by feeding tube. Gunner does not walk but he just started toget around with his specially made wheelchair!!!! Gunner is deaf and nonverbal\, but he loves to blowbubbles!!! \nPlease click here if you cannot attend but would like to donate to Bulls and Barrels.
URL:https://www.cdlsusa.org/event/bulls-and-barrels-series-6/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250212T110000
DTEND;TZID=UTC:20250212T120000
DTSTAMP:20260403T174456
CREATED:20241217T192532Z
LAST-MODIFIED:20250121T184935Z
UID:8590-1739358000-1739361600@www.cdlsusa.org
SUMMARY:International CdLS Remembrance Day
DESCRIPTION:Losing a loved one with CdLS at any age can be life-altering. Parents\, siblings\, relatives\, and friends feel a tremendous loss and often have difficulty understanding why. It is so important that we as a community surround them with support and unconditional love. Although they have lost their child\, grandchild\, or sibling – they still belong and will forever be part of our journey. \nOn February 12\, we will be celebrating CdLS Remembrance Day. We ask that our fellow CdLS community members partake in this special day with us to show solidarity with families who no longer have loved ones with them. \nPlease take a moment to remember everyone with CdLS who has died over the years. \nDownload and add the Facebook profile picture for International CdLS Remembrance Day. \nFor more information\, contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/international-cdls-remembrance-day/
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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250227T200000
DTEND;TZID=UTC:20250227T210000
DTSTAMP:20260403T174456
CREATED:20250131T025152Z
LAST-MODIFIED:20250131T025152Z
UID:8772-1740686400-1740690000@www.cdlsusa.org
SUMMARY:Being My Child's Protector\, Advocate\, and Decision-Maker in the NICU Webinar
DESCRIPTION:Anticipating the birth of a child can be one of the happiest times for parents. But when babies have life-threatening medical issues and begin their lives in the NICU\, everything can change. For some parents\, this may mean navigating a new role: learning how to navigate the NICU and communicate with the medical team; figuring out what matters most to their baby and family; considering intense medical interventions\, interpreting medical jargon; seeking clarity in the absence of a clear prognosis; building a trusting relationship with the baby’s medical team. \nJoin Dr. Monica Lemmon and several experienced NICU parents\, for a discussion about strategies to build helpful parent-clinician alliance and parental confidence in decision-making for the newborn in the NICU. \nThis event will take place on Thursday\, February 27th at 8:00 pm EST (7:00 pm CT\, 6:00 pm MT\, 5:00 pm PT). \nRegister here
URL:https://www.cdlsusa.org/event/being-my-childs-protector-advocate-and-decision-maker-in-the-nicu-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/01/February-ITR-Being-My-Childs-Protector-in-the-NICU_Social-Media-300x300-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250301
DTEND;VALUE=DATE:20250401
DTSTAMP:20260403T174456
CREATED:20250307T193310Z
LAST-MODIFIED:20250307T193714Z
UID:8918-1740787200-1743465599@www.cdlsusa.org
SUMMARY:Stop and Shop Community Bag Program
DESCRIPTION:For the entire month of March\, when you purchase a $2.50 reusable Community Bag at the Stop & Shop located at 498 Bushy Hill Road\, Simsbury\, CT\, $1 is donated to the CdLS Foundation. Our goal is to sell 500 bags (including virtually)\, equivalent to $2\,000500 bags (including virtually)\, equivalent to $2\,000 raisedraised. We are confident that with the help of our dedicated supporters\, we can reach this goal. \n\nWe strongly encourage you to share this news with family and friends as well! \n\nThe Community Bags are displayed around the store and at the checkout. If you can’t make it to the Simsbury location\, you can still support the foundation and purchase a virtual bag for $2.50. Just click the link below to make your donation.\n\nThank You for Your Continued Support!Thank You for Your Continued Support!\n\nClick Here to Donate to the Stop & Shop Give Back
URL:https://www.cdlsusa.org/event/stop-and-shop-community-bag-program/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/03/ZxVqZtaAWHXJVqbtxZKa2GyKLXvfbXsoJg0XTY9P.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250310T200000
DTEND;TZID=UTC:20250310T210000
DTSTAMP:20260403T174456
CREATED:20250131T202031Z
LAST-MODIFIED:20250131T202031Z
UID:8775-1741636800-1741640400@www.cdlsusa.org
SUMMARY:Supporting Your Family's Wishes: The Value of Advance Directives and Preparing for Complex Medical Decisions Webinar
DESCRIPTION:Please join us to explore how completing healthcare advance directives for/with your child can support your family’s goals and wishes. We will discuss the importance of discussing and documenting healthcare wishes upstream of an emergent/urgent medical event\, medical implications of and quality-of-life considerations related to advance directives\, and currently available directives. \nPresented by Fiona Sampey and Amy Vance\, co-founders of Advanced Conversations. \nThis event will take place on Monday\, March 24th 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/supporting-your-familys-wishes-the-value-of-advance-directives-and-preparing-for-complex-medical-decisions-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/01/March-TR-Advance-Care-Planning-300x300-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250312
DTEND;VALUE=DATE:20250313
DTSTAMP:20260403T174456
CREATED:20250131T024246Z
LAST-MODIFIED:20250131T024246Z
UID:8771-1741737600-1741823999@www.cdlsusa.org
SUMMARY:Multi-Specialty Clinic for children with CdLS at Shriners Children's Salk Lake City
DESCRIPTION:Multi-Specialty Clinic for children with CdLS will be held on March 12\, 2025\, at Shriners Children’s Salt Lake City.\nThe CdLS Foundation and Shriners Children’s Salt Lake City have a long-standing partnership. We are truly grateful to work together. The clinic is a wonderful opportunity to meet with multiple doctors with expertise in CdLS all in one day.
URL:https://www.cdlsusa.org/event/multi-specialty-clinic-for-children-with-cdls-at-shriners-childrens-salk-lake-city/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250412
DTEND;VALUE=DATE:20250413
DTSTAMP:20260403T174456
CREATED:20250131T234124Z
LAST-MODIFIED:20250131T234124Z
UID:8784-1744416000-1744502399@www.cdlsusa.org
SUMMARY:Adolescent and Adult Multidisciplinary Clinic
DESCRIPTION:This Foundation-managed\, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore\, MD. Foundation Medical Director Antonie Kline\, M.D.\, Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC\, has led these clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. \nPresentations on the following topics from CdLS Clinical Advisory Board members: Behavioral Psychology\, Child Psychiatry\, Gastroenterology\, Genetics\, Gynecology\, Neurology\, Pediatric Ophthalmology\, Speech and Language\, Urology. Live Q&A with CdLS Clinical Advisory Board Members. \nFor more information on the clinic or to secure your spot\, contact Mindy Graham or call 860.676.8166.
URL:https://www.cdlsusa.org/event/adolescent-and-adult-multidisciplinary-clinic-3/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250412T110000
DTEND;TZID=UTC:20250412T140000
DTSTAMP:20260403T174456
CREATED:20250108T205129Z
LAST-MODIFIED:20250313T163325Z
UID:8685-1744455600-1744466400@www.cdlsusa.org
SUMMARY:NORD (National Organization for Rare Disease ) Color Run for CdLS
DESCRIPTION:Join us for a new\, fun event to raise awareness and funds for our CdLS community.\nThe Eckerd College Science Outreach Club has recently established a Students for Rare chapter affiliated with the National Organization for Rare Disorders. Their mission is to raise awareness about rare diseases and advocate for equitable access to healthcare for individuals within the rare disease community. Through education\, outreach\, and advocacy\, the organization aims to amplify the voices of those affected by rare conditions and work toward a more inclusive and supportive healthcare system. \nMadi McCune\, a senior and member of the Science Outreach Club (SOC)\, chose the CdLS Foundation because Madi did a research project through Harvard Medical School this past summer at Massachusetts General Hospital’s Center for Genomic Medicine that focused on the pathophysiology of cohesinopathies\, CdLS being the most prominent. Learning about this disease encouraged her and her chapter to involve ourselves further by creating a fundraiser to support future research and the families impacted by this rare genetic disorder. \nSupport Madi and the Eckerd College Science Outreach Club Students and their NORD Chapter on Saturday\, April 12 at 11:00 a.m. at the Eckerd College Campus GO Pavilion for the NORD Color Run for CDLS. It will be a 1.5-mile walk/run. Have some fun and raise awareness and funds for this rare disorder. \nSee you there! \nThank you. Together\, we will continue to reach out\, provide help\, and give hope to the CdLS community. \nSaturday\, April 12\, 2025\n11:00 a.m.\nEckerd College Waterfront\n4200 54th Ave. S\nSt. Petersburg\, FL\n\nCan’t make the Color Run but still want to support it? Scan the QR Code.
URL:https://www.cdlsusa.org/event/nord-national-organization-for-rare-disease-color-run-for-cdls/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/01/colorrunpng.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20250423T200000
DTEND;TZID=UTC:20250423T210000
DTSTAMP:20260403T174456
CREATED:20250131T202455Z
LAST-MODIFIED:20250131T202455Z
UID:8777-1745438400-1745442000@www.cdlsusa.org
SUMMARY:Hear from the Siblings: Sharing Their Journey with Medical Complexity
DESCRIPTION:Join a panel of siblings to gain insights into the fears and worries that siblings carry\, the things that helped them (and those that didn’t)\, and how loving a brother or sister with medical complexity shapes them. \nThis session will be moderated by Dr. Wendy Plante\, who for over twenty years has worked with siblings of children with illness and disability and their families and has been involved with research and training to address siblings’ needs. \nThis event will take place on Wednesday\, April 23rd 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/hear-from-the-siblings-sharing-their-journey-with-medical-complexity/
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END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250510
DTEND;VALUE=DATE:20251001
DTSTAMP:20260403T174456
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/
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END:VEVENT
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