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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;TZID=UTC:20240613T130000
DTEND;TZID=UTC:20240613T140000
DTSTAMP:20260403T184249
CREATED:20240131T023313Z
LAST-MODIFIED:20240131T023313Z
UID:7559-1718283600-1718287200@www.cdlsusa.org
SUMMARY:Parent University: FATHER’S DAY MONTH AT ITS BEST – DADS\, DADS\, AND MORE DADS! THE IMPORTANT ROLE OF DAD IN THE PLANNING FOR THE FUTURE
DESCRIPTION:Our guests from the Special Dads Network talk about their experiences. How can DADs help identify EMPLOYMENT opportunities for their child? How might the Special Dads Network help? \nRegister now
URL:https://www.cdlsusa.org/event/parent-university-fathers-day-month-at-its-best-dads-dads-and-more-dads-the-important-role-of-dad-in-the-planning-for-the-future/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240615T090000
DTEND;TZID=UTC:20240615T120000
DTSTAMP:20260403T184249
CREATED:20240430T165649Z
LAST-MODIFIED:20240507T194636Z
UID:7746-1718442000-1718452800@www.cdlsusa.org
SUMMARY:The Purple Pickle
DESCRIPTION:Mixed Doubles Pickleball Tournament \nCelebrating people with Cornelia de Lange Syndrome and disabilities.  \nTournament Details\nJune 15 | 9 AM to 12 PM \nThe Painted Pickle\n976 Brady Ave NW\, Atlanta\, GA 30318 \n\n\nTeams will advance through double elimination with teams playing one 15-point game per round. \n\n\nLosing once moves you to a secondary bracket\, maintaining a chance for redemption. Each team will be guaranteed to play twice. \n\n\nOnly mixed doubles teams are invited to compete. \n\n\nAll skill levels are invited to participate for a chance to win the Purple Paddle. \nTo learn more or to register\, click here.
URL:https://www.cdlsusa.org/event/the-purple-pickle/
LOCATION:The Purple Pickle\, 976 Brady Ave NW\, Atlanta\, GA\, 30318\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/04/thumbnail_TPP-Postcard-One-Side.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240706T110000
DTEND;TZID=UTC:20240706T140000
DTSTAMP:20260403T184249
CREATED:20240327T184056Z
LAST-MODIFIED:20240327T184056Z
UID:7678-1720263600-1720274400@www.cdlsusa.org
SUMMARY:Nebraska Family Gathering
DESCRIPTION:Hosted by Michelle Reed\, mother of Beth Ann and Christy Courtney Whetstone\, mother of Bailey Aldersgate United Methodist Church\, 8320 South Street\, Lincoln NE We will be in the Sunshine Room and our lunch will be catered in by HyVee.
URL:https://www.cdlsusa.org/event/nebraska-family-gathering/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2022/10/Family-gathering-header-social-media-image-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240713T190000
DTEND;TZID=UTC:20240713T200000
DTSTAMP:20260403T184249
CREATED:20240607T222801Z
LAST-MODIFIED:20240626T224239Z
UID:7795-1720897200-1720900800@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\n\nIf you cannot attend but would like to donate to Bulls and Barrels\, donate here.\n\n\nCarter Arena CR345/347 Chiefland\, FL
URL:https://www.cdlsusa.org/event/bulls-and-barrels-series/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/06/bandb.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240718T130000
DTEND;TZID=UTC:20240718T140000
DTSTAMP:20260403T184249
CREATED:20240131T023613Z
LAST-MODIFIED:20240131T023613Z
UID:7560-1721307600-1721311200@www.cdlsusa.org
SUMMARY:Parent University: LIFE SHOULD NOT BE ALL WORK AND NO PLAY – THE IMPORTANCE OF FRIENDS
DESCRIPTION:Let’s talk with some social programs around the country and how to learn more about them. The value of friendships\, and what does that mean for you and your child. Build your own network or find one to fit into. \nRegister now
URL:https://www.cdlsusa.org/event/parent-university-life-should-not-be-all-work-and-no-play-the-importance-of-friends/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240724T053000
DTEND;TZID=UTC:20240724T190000
DTSTAMP:20260403T184249
CREATED:20240723T191956Z
LAST-MODIFIED:20240723T192326Z
UID:7849-1721799000-1721847600@www.cdlsusa.org
SUMMARY:Community Fun Run/walk
DESCRIPTION:For a Community Event to support Team CdLS athletes Sam\, Kerry\, and Dannielle in the Bank of America Chicago Marathon this fall. \nFor more information\, please contact Lisa Schroeder or call 860-899-1227. \nEvent Flyer
URL:https://www.cdlsusa.org/event/community-fun-run-walk/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2023/01/team-cdls-logo.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240809T080000
DTEND;TZID=UTC:20240809T170000
DTSTAMP:20260403T184249
CREATED:20240809T192434Z
LAST-MODIFIED:20240809T192434Z
UID:7963-1723190400-1723222800@www.cdlsusa.org
SUMMARY:Courageous Parent Network: Grief Across the Caregiving Trajectory
DESCRIPTION:Grief is naturally a parent’s constant companion\, from diagnosis – or lack thereof – onwards\, including into bereavement. Psychologist Wendy Lichenthal\, PhD is both a grief researcher and a clinician\, with a particular expertise in the psychology of cancer for the patient and the family.\n\nShe will frame aspects of the grief experience and discuss using meaning and meaning-making to help with coping\, regardless of diagnosis.\n\nRegister Here\n\nThis event will take place on November 7th 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-grief-across-the-caregiving-trajectory/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/08/November-ITR-Grief-Across-the-Caregiving-Trajectory-300x300-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240815T130000
DTEND;TZID=UTC:20240815T140000
DTSTAMP:20260403T184249
CREATED:20240131T023807Z
LAST-MODIFIED:20240131T023807Z
UID:7561-1723726800-1723730400@www.cdlsusa.org
SUMMARY:Parent University: TRANSPORTATION – A BIG MISSING LINK TO SUCCESS
DESCRIPTION:What are the options out there? Who will do the driving if you are not around? Are there any companies creating solutions to solve this need? \nRegister now
URL:https://www.cdlsusa.org/event/parent-university-transportation-a-big-missing-link-to-success/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240817T190000
DTEND;TZID=UTC:20240817T210000
DTSTAMP:20260403T184249
CREATED:20240614T221109Z
LAST-MODIFIED:20240626T224157Z
UID:7797-1723921200-1723928400@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-2/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/06/bandb.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240822T200000
DTEND;TZID=UTC:20240822T210000
DTSTAMP:20260403T184249
CREATED:20240809T191704Z
LAST-MODIFIED:20240809T193214Z
UID:7960-1724356800-1724360400@www.cdlsusa.org
SUMMARY:Courageous Parent Network: Let’s Make Caregiving a Bit Easier Webinar
DESCRIPTION:Finding resources and organizing information are two common struggles for many parents in our Network. But great news – CPN recently discovered two amazing tools that promise to make these tasks much easier! In this session\, we’re thrilled to have the founders of mejo and Librarey with us. They’ll demonstrate how their innovative tools can help parents quickly identify support organizations and streamline care documents for their children. Join us to learn how mejo and Librarey can transform your approach to managing your child’s care needs.\n\nLibrarey\, part of Comend\, is designed for the rare disease and disability community. Beyond being a search engine\, it’s a collaborative space where families\, caregivers\, and advocates impacted by rare diseases and disabilities can find and share resources\, connect with supportive communities\, and create curated collections customized to their unique needs.\n\nwww.librarey.com\n\nmejo (short for ‘me journey’) is a web app that provides parents and caregivers with a better way to simplify\, organize and share their child’s most important medical + care information. Easy to use\, mejo helps caregivers save time and gain peace of mind by organizing their child’s information into easily digestible views that can be securely shared – with teachers\, caregivers\, family members and clinicians – in a click.\n\nwww.mymejo.com\n\nThis event will take place on Thursday\, August 22 at 8:00 pm ET (7:00 pm CT\, 6:00 pm MT\, 5:00 pm PT).\n\nRegister Here
URL:https://www.cdlsusa.org/event/courageous-parent-network-lets-make-caregiving-a-bit-easier-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/08/August-ITR-Lets-Make-Caregiving-A-Bit-Easier-1-300x300-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240908T170000
DTEND;TZID=UTC:20240908T200000
DTSTAMP:20260403T184249
CREATED:20240827T195645Z
LAST-MODIFIED:20240827T195645Z
UID:8003-1725814800-1725825600@www.cdlsusa.org
SUMMARY:CdLS Awareness Dinner & Fundraiser Event
DESCRIPTION:Please join us! CdLS Awareness Dinner & Fundraiser Event Honoring Kavin Mistry \nMeet Kavin\, my remarkable cousin whose journey with Cornelia de Lange Syndrome has been one of resilience and inspiration. Born prematurely with multiple medical complications\, Kavin was diagnosed with CdLS. Throughout this journey\, Kavin and his family have been supported by the CdLS Foundation of USA. His condition has not diminished his vibrant spirit. Kavin is a social and friendly individual who brings joy to those around him with his love for singing and playing musical instruments. His infectious smile and adventurous spirit are evident in his passion for plane rides and his travels around the globe. Kavin’s story is a testament to the strength and joy that define him\, inspiring all who have the pleasure of knowing him. \nSunday\, September 8\, 5:00pm\nAshirwad Palace\n169 South Salem Street Randolph\, NJ 07869 \nAdvance Ticket Purchase Required\nEvent Tickets:\n$50 Adults\, $30 Kids (age 5-12) Kids under 5 are Free\n(Includes a full course dinner buffet & drinks)
URL:https://www.cdlsusa.org/event/cdls-awareness-dinner-fundraiser-event/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/08/Kavin-Mistry.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240912T130000
DTEND;TZID=UTC:20240912T140000
DTSTAMP:20260403T184249
CREATED:20240131T024118Z
LAST-MODIFIED:20240131T024118Z
UID:7562-1726146000-1726149600@www.cdlsusa.org
SUMMARY:Parent University: RETIRING FOR 3 – HOW TO HAVE ENOUGH FOR YOUR OWN RETIREMENT AND THEIRS\, TOO
DESCRIPTION:How much is enough for you\, as the caregivers? How much is enough for your child? How to incorporate your child’s plan into your own. What is the most effective way to fund the trust? Life insurance? IRAs? Other? How to plan your own Social Security to benefit your child’s future – Learn a technique to identify your options. \nRegister now
URL:https://www.cdlsusa.org/event/parent-university-retiring-for-3-how-to-have-enough-for-your-own-retirement-and-theirs-too/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240913
DTEND;VALUE=DATE:20240916
DTSTAMP:20260403T184249
CREATED:20231122T220315Z
LAST-MODIFIED:20231122T220315Z
UID:7443-1726185600-1726444799@www.cdlsusa.org
SUMMARY:CdLS Foundation East Coast Regional Retreat
DESCRIPTION:We’re excited to announce the 2024 East Coast Regional Retreat.     \nMark your calendars!   \nGuided by your input\, the CdLS Foundation has reimaged what was the National conference into regional retreats. The 2024 East Coast Regional Retreat will be September 13- 15\, 2024\, at beautiful Camp Saginaw in Oxford\, PA. This two-day event offers educational workshops\, a fun-filled and action-packed day of activities for siblings\, ample time to socialize with those you know\, and a wonderful opportunity to make new friends.   \nThe camp is just over an hour away from Baltimore and less than 1.5 hours from Philadelphia. The camp’s beautiful landscape is perfect for learning\, sharing\, and relaxing. As the only group on site for the weekend\, our families can enjoy the amazing activities and landscape Camp Saginaw offers. The camp features modern facilities with multiple workshops\, socializing\, and lodging spaces.     \nIn addition to workshops\, parent and grandparent groups\, an active day for siblings\, and time to socialize\, members of the CdLS Foundation Clinical Advisory Board will be available in small group “Meet the Expert” sessions to answer questions and discuss concerns.   \nBe on the lookout for more information in emails\, social media\, and Reaching Out! You won’t want to miss out! See you Sept 13-15 in Pennsylvania.
URL:https://www.cdlsusa.org/event/cdls-foundation-east-coast-regional-retreat/
LOCATION:Camp Saginaw\, 740 Saginaw Road\, Oxford\, PA\, 19363\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/11/2023-Facebook.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240919T200000
DTEND;TZID=UTC:20240919T210000
DTSTAMP:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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:20260403T184249
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
END:VCALENDAR