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X-ORIGINAL-URL:https://www.cdlsusa.org
X-WR-CALDESC:Events for CdLS Foundation
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TZOFFSETFROM:+0000
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DTSTART:20220101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20231104
DTEND;VALUE=DATE:20231105
DTSTAMP:20260403T172209
CREATED:20220812T001946Z
LAST-MODIFIED:20220812T001946Z
UID:6578-1699056000-1699142399@www.cdlsusa.org
SUMMARY:Multidisciplinary Clinic for Adolescents and Adults
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/multidisciplinary-clinic-for-adolescents-and-adults-10/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231116T120000
DTEND;TZID=UTC:20231116T130000
DTSTAMP:20260403T172209
CREATED:20230829T233926Z
LAST-MODIFIED:20230829T233926Z
UID:7312-1700136000-1700139600@www.cdlsusa.org
SUMMARY:2023 Parent University™ Class 11: The Big Worry; Future Residential Options
DESCRIPTION:Sponsored by: Protected Tomorrows’ 2023 Parent University™\nSpeaker: Mary Anne Ehlert\, President & Founder\, Protected Tomorrows\, Inc.\n\nDescription:\n\nProtected Tomorrows’ 2023 Parent University™ brings you our eleventh in a series of educational webinars…\n\n“The Big Worry; Future Residential Options”\n\nWe often hear this is the biggest worry. Where\, when\, how much it will cost\, and most importantly\, who will provide the oversight. Our panel will give us insights as to the steps to take\, how to think about starting\, is it ever too early or too late\, and finally how to involve the whole family and the Dream team in this process. There are many\, many types\, we’ll develop a tool together to identify what is the starting point of identifying the most important things you need to look for in your own situation.\n\nMary Anne Ehlert will host this online Zoom class on:\nNovember 16th\, 2023\n12:00pm – 1:00 pm CST\n\nRegister here.
URL:https://www.cdlsusa.org/event/2023-parent-university-class-11-the-big-worry-future-residential-options/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231128
DTEND;VALUE=DATE:20231129
DTSTAMP:20260403T172209
CREATED:20230215T211818Z
LAST-MODIFIED:20230215T215631Z
UID:6974-1701129600-1701215999@www.cdlsusa.org
SUMMARY:Giving Tuesday
DESCRIPTION:Mark your calendars to create your social media outreach.
URL:https://www.cdlsusa.org/event/giving-tuesday/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/02/GT-LOGO.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231207T120000
DTEND;TZID=UTC:20231207T130000
DTSTAMP:20260403T172209
CREATED:20230829T234147Z
LAST-MODIFIED:20230829T234147Z
UID:7313-1701950400-1701954000@www.cdlsusa.org
SUMMARY:2023 Parent University™ Class 12: Wrap Up: Did you Get Real?
DESCRIPTION:Sponsored by: Protected Tomorrows’ 2023 Parent University™\nSpeaker: Mary Anne Ehlert\, President & Founder\, Protected Tomorrows\, Inc.\n\nDescription:\n\nProtected Tomorrows’ 2023 Parent University™ brings you our twelfth and final in a series of educational webinars…\n\n“Wrap Up: Did you Get Real?”\n\nWe started with wanting to be real and created a list of goals in January. How did you do? What did you accomplish\, and what are the stumbling blocks? We’ll focus on successes and recognize where you started and how far you have come. It’s time to pat yourself on the back\, and graduate from Protect Tomorrows Parent University 2023. If you identified roadblocks\, how do you get help? We’ll set very specific goals to carry forward into 2024.\n\nMary Anne Ehlert will host this online Zoom class on:\nDecember 7th\, 2023\n12:00pm – 1:00 pm CST\n\nRegister here.
URL:https://www.cdlsusa.org/event/2023-parent-university-class-12-wrap-up-did-you-get-real/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240212
DTEND;VALUE=DATE:20240213
DTSTAMP:20260403T172209
CREATED:20230829T231819Z
LAST-MODIFIED:20230829T231819Z
UID:7306-1707696000-1707782399@www.cdlsusa.org
SUMMARY:A Day of Remembrance
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.\n\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.\n\nPlease take a moment to remember everyone with CdLS who has died over the years.\n\nFor more information\, contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/a-day-of-remembrance-3/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/02/CdLS-Angels-Day-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240215T130000
DTEND;TZID=UTC:20240215T140000
DTSTAMP:20260403T172209
CREATED:20240131T021629Z
LAST-MODIFIED:20240131T021752Z
UID:7553-1708002000-1708005600@www.cdlsusa.org
SUMMARY:Parent University: BACK TO BASICS AND WHAT’S NEW
DESCRIPTION:This is for our new participants as well as those who have been with us before. We will review the basics and hear about what’s new. What do you have to pay attention to and how will it change your plan? Government Benefits\, Special Needs Trusts\, ABLE accounts\, Secure Act 2.0\, Tax Changes and more.\n\nRegister Here
URL:https://www.cdlsusa.org/event/parent-university-back-to-basics-and-whats-new/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240229T190000
DTEND;TZID=UTC:20240229T203000
DTSTAMP:20260403T172209
CREATED:20240131T014039Z
LAST-MODIFIED:20240131T025924Z
UID:7552-1709233200-1709238600@www.cdlsusa.org
SUMMARY:Rare Disease Day Viewing Party: UNSEEN
DESCRIPTION:Join families\, board members\, and staff members on Rare Disease Day\, February 29\, 2024\, for a viewing party.\n\nMany caregivers for children or adults who are disabled or medically complex are exhausted and isolated. The award-winning “UNSEEN” documentary gives an honest glimpse into caregivers’ lives to enable change for millions.\n\nTo watch the preview of UNSEEN click here.\n\nRegister here!
URL:https://www.cdlsusa.org/event/rare-disease-day-viewing-party-unseen/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2024/01/Unseen.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240313
DTEND;VALUE=DATE:20240314
DTSTAMP:20260403T172209
CREATED:20230829T231002Z
LAST-MODIFIED:20230829T231525Z
UID:7304-1710288000-1710374399@www.cdlsusa.org
SUMMARY:Multi-Specialty Clinic for Children with CdLS
DESCRIPTION:We are excited to share that there will be a clinic on March 13\, 2024 at Shriners Children’s Salt Lake City. The clinic is a wonderful opportunity to meet with mulitiple doctors with expertise in CdLS all in one day.
URL:https://www.cdlsusa.org/event/multi-specialty-clinic-for-children-with-cdls/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/02/ShrinersChildrensLogo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240316
DTEND;VALUE=DATE:20240317
DTSTAMP:20260403T172209
CREATED:20240131T022015Z
LAST-MODIFIED:20240131T223630Z
UID:7554-1710547200-1710633599@www.cdlsusa.org
SUMMARY:Cornhole Tournament to benefit the CdLS Foundation
DESCRIPTION:Join us for a fundraiser benefiting the CdLS Foundation for Zack Homan’s\nCBSL Project\nPrizes\, Silent Auction\, Dinner\, and Drinks!\n\n\nHoly Ghost Hall\n7960 Mill Station Rd\nSebastopol\, CA 95472
URL:https://www.cdlsusa.org/event/cornhole-tournament-to-benefit-the-cdls-foundation/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2024/01/Zack-and-AJ.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240321T130000
DTEND;TZID=UTC:20240321T140000
DTSTAMP:20260403T172209
CREATED:20240131T022406Z
LAST-MODIFIED:20240131T022406Z
UID:7556-1711026000-1711029600@www.cdlsusa.org
SUMMARY:Parent University: OUR TOOLBOX IS FULL!! WHAT TOOL DO I USE WHEN? IT’S SO CONFUSING!! HELP!!
DESCRIPTION:We hear from so many families about how they are confused as to how to use many tools we now have for planning for our loved one. Some of the tools we have are: 3rd Party Special Needs Trusts\, 1st Party Special Needs Trusts\, SSI\, SSDI\, DAC\, ABLE accounts\, and work income. What tool to use when? Who to call? What to pay for? When to pay for it? What account to use? Who needs to know this? Parents\, guardians\, future guardians\, the person with a disability. Let’s talk about how to make it SIMPLE. \nRegister now
URL:https://www.cdlsusa.org/event/parent-university-our-toolbox-is-full-what-tool-do-i-use-when-its-so-confusing-help/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240413T083000
DTEND;TZID=UTC:20240413T150000
DTSTAMP:20260403T172209
CREATED:20230829T232251Z
LAST-MODIFIED:20231206T223845Z
UID:7307-1712997000-1713020400@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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240418T130000
DTEND;TZID=UTC:20240418T140000
DTSTAMP:20260403T172209
CREATED:20240131T022709Z
LAST-MODIFIED:20240131T022709Z
UID:7557-1713445200-1713448800@www.cdlsusa.org
SUMMARY:Parent Unversity: WE ALL NEED A VACATION! IS IT POSSIBLE TO MAKE THAT HAPPEN? YES!
DESCRIPTION:Let’s meet some service providers that assist in vacation planning when you have a family member with unique needs. We’ll hear from some families who had successful and amazing experiences. Now is a great time to start researching and finding out what will work for your family. \nRegister now
URL:https://www.cdlsusa.org/event/parent-unversity-we-all-need-a-vacation-is-it-possible-to-make-that-happen-yes/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240504T113000
DTEND;TZID=UTC:20240504T153000
DTSTAMP:20260403T172209
CREATED:20240105T013221Z
LAST-MODIFIED:20240108T223642Z
UID:7489-1714822200-1714836600@www.cdlsusa.org
SUMMARY:Family Gathering - Virginia
DESCRIPTION:Hosted by Emily Munoz\, mom to Damien and Paula Messer\, mom to William\n\nSaturday May 4th\, 2024 \n11:30am – 3:30pm \nLambert’s Point Community Center \n1251 W. 42nd St.\nNorfolk\, VA  23508\n\n\nMain dish will be provided by hosts.  Families are asked to bring a side dish\, snacks or drinks.\n\nRegister here
URL:https://www.cdlsusa.org/event/family-gathering-virginia/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2022/09/Family-gathering-header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240509T130000
DTEND;TZID=UTC:20240509T140000
DTSTAMP:20260403T172209
CREATED:20240131T023015Z
LAST-MODIFIED:20240131T023015Z
UID:7558-1715259600-1715263200@www.cdlsusa.org
SUMMARY:Parent University: HOW TO INTRODUCE FUTURE GUARDIANS AND TRUSTEES INTO OUR FAMILY PROCESS – WHEN AND HOW?
DESCRIPTION:Family/Sibling communications. What they should know. What do they think they know and don’t know? If utilizing Corporate Guardians and Trustees\, when to start to bring them into your process? How to find peace of mind about the future. \nRegister now
URL:https://www.cdlsusa.org/event/parent-university-how-to-introduce-future-guardians-and-trustees-into-our-family-process-when-and-how/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240511
DTEND;VALUE=DATE:20240512
DTSTAMP:20260403T172209
CREATED:20230829T231247Z
LAST-MODIFIED:20231122T215536Z
UID:7305-1715385600-1715471999@www.cdlsusa.org
SUMMARY:International CdLS Awareness Day
DESCRIPTION:International CdLS Awareness Day is observed each year in order to shed light on this often misdiagnosed\, little-known genetic syndrome. Parents\, volunteers and others request official Awareness Day proclamations from governors and local leaders; hang awareness flyers in public places; make presentations to civic groups or health workers; write to their local newspapers; and much more. \nFor more information contact Gabrielle Nadeau
URL:https://www.cdlsusa.org/event/international-cdls-awareness-day/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/06/2014.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240511T110000
DTEND;TZID=UTC:20240511T150000
DTSTAMP:20260403T172209
CREATED:20240422T222946Z
LAST-MODIFIED:20240422T223056Z
UID:7727-1715425200-1715439600@www.cdlsusa.org
SUMMARY:Let's Talk About CdLS 5th Annual Parade
DESCRIPTION:Join Sara\, the sister of Samira\, for the Let’s Talk About CdLS 5th Annual Parade. \nSaturday\, May 11\, 2024 \n11:00 a.m. – 3:00 p.m. \nCentral Falls High School \n24 Summer Street \nCentral Falls\, RI \n 
URL:https://www.cdlsusa.org/event/lets-talk-about-cdls-5th-annual-parade/
LOCATION:Central Falls High School\, 24 Summer Street\, Central Falls\, RI\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2024/04/thumbnail_image0.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Karachi:20240511T130000
DTEND;TZID=Asia/Karachi:20240511T150000
DTSTAMP:20260403T172209
CREATED:20240416T000840Z
LAST-MODIFIED:20240416T171442Z
UID:7715-1715432400-1715439600@www.cdlsusa.org
SUMMARY:CdLS Awareness Day Event in Fairmont\, MN
DESCRIPTION:Join families in Fairmont\, MN\, for an International Awareness Day Event! Hosted by the Fausch family! Lunch will be served. \n  \n 
URL:https://www.cdlsusa.org/event/cdls-awareness-day-event-in-fairmont-mn/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2024/04/Screenshot-2024-04-13-at-2.36.23 PM.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240520
DTEND;VALUE=DATE:20240521
DTSTAMP:20260403T172209
CREATED:20240214T223203Z
LAST-MODIFIED:20240214T223538Z
UID:7631-1716163200-1716249599@www.cdlsusa.org
SUMMARY:2024 CdLS New England Golf Classic
DESCRIPTION:Plans are underway for a fantastic golf fundraiser at Ipswich Country Club for the 31st Annual New England Golf Classic to be held on Monday\, MAY 20\, 2024! This popular event will be played in spring. So be sure to make this your first golf outing of the year\, and be ready for a great day of golf and camaraderie!
URL:https://www.cdlsusa.org/event/2024-cdls-new-england-golf-classic/
LOCATION:Ipswich Country Club\, 148 Country Club Way\, Ipswich\, MA\, 01938\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2022/11/ne-golf22.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240613T130000
DTEND;TZID=UTC:20240613T140000
DTSTAMP:20260403T172209
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:20260403T172209
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:20260403T172209
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:20260403T172209
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:20260403T172209
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:20260403T172209
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:20260403T172209
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/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240815T130000
DTEND;TZID=UTC:20240815T140000
DTSTAMP:20260403T172209
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/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240817T190000
DTEND;TZID=UTC:20240817T210000
DTSTAMP:20260403T172209
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/
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DTSTART;TZID=UTC:20240822T200000
DTEND;TZID=UTC:20240822T210000
DTSTAMP:20260403T172209
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/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240908T170000
DTEND;TZID=UTC:20240908T200000
DTSTAMP:20260403T172209
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
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BEGIN:VEVENT
DTSTART;TZID=UTC:20240912T130000
DTEND;TZID=UTC:20240912T140000
DTSTAMP:20260403T172209
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/
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