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X-ORIGINAL-URL:https://www.cdlsusa.org
X-WR-CALDESC:Events for CdLS Foundation
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DTSTART:20180101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20201014
DTEND;VALUE=DATE:20201015
DTSTAMP:20260404T075004
CREATED:20201002T224123Z
LAST-MODIFIED:20201002T224123Z
UID:3224-1602633600-1602719999@www.cdlsusa.org
SUMMARY:Special Olympics Illinois hosts - Including IL ABLE in Your Special Needs Financial Plan - Part 2
DESCRIPTION:Learn how to put IL ABLE to work for you and/or for your Special Olympics athlete during this 3-part Webinar series. IL ABLE will join Protected Tomorrows as guest presenters from Noon – 1:00 pm Central Time on October 7\, October 14 and October 21. \nPart 2: \n• IL ABLE Accounts\, Public Benefits and Special Needs Financial Planning \no ABLE and public benefits\no Practical uses of the IL ABLE account\no How an ABLE account might be funded\no What Type of Saver and Investor Are You?\no Review of IL ABLE investment and savings line-up\no Preview next session \nTime: Oct 14\, 2020 12:00 PM in Central Time (US and Canada) \nRegistration Here \nAll three parts of this webinar series will be recorded. If you are unable to attend but would like to receive the information needed to watch the recording\, please register and you will receive this information.
URL:https://www.cdlsusa.org/event/special-olympics-illinois-hosts-including-il-able-in-your-special-needs-financial-plan-part-2/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/10/Three-Part-Webinar-Series-Image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201012
DTEND;VALUE=DATE:20201013
DTSTAMP:20260404T075004
CREATED:20200320T182851Z
LAST-MODIFIED:20200320T182924Z
UID:2861-1602460800-1602547199@www.cdlsusa.org
SUMMARY:Missouri Charity Golf Tournament
DESCRIPTION:
URL:https://www.cdlsusa.org/event/missouri-charity-golf-tournament-2/
LOCATION:Tapawingo Golf Course\, 13001 Gary Player Dr\, St. Louis\, MO\, 63127\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/07/mo-golf.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201011
DTEND;VALUE=DATE:20201012
DTSTAMP:20260404T075004
CREATED:20191115T015413Z
LAST-MODIFIED:20191202T223223Z
UID:2637-1602374400-1602460799@www.cdlsusa.org
SUMMARY:2020 Bank of America Chicago Marathon
DESCRIPTION:Many runners say that running has changed their lives.\nTeam CdLS runners say that they have changed the lives of others.\nJoin the Cornelia de Lange Syndrome (CdLS) Foundation\nat the world-renowned Bank of America Chicago Marathon\nSunday\, October 11\, 2020 \nThe CdLS Foundation will be there with you every step of the way\, providing you with:\n• Guaranteed race entry\n• Complimentary entry to the Balbo Hospitality Tent\n• An official Team CdLS singlet\n• Pre-Race & Post-Race Dinner\n• Team CdLS Swag Bag\n• Weekly training guides sent via email\n• Fundraising tools including your own personalized web page\n• Supportive teammates who may turn into life long friends\n• The satisfaction of knowing you’re helping individuals nationwide\, who have CdLS\nJoin us and you will run away from the race with new friends\, a sense of accomplishment and the satisfaction of making a difference. \nAs a Team CdLS member\, you are provided a guaranteed entry into the Bank of America Chicago Marathon with the understanding that you will meet the race’s requirements to:\n• Commit to raise a minimum of $1\,250 for children with CdLS\n• Pay all fees associated with entering and participating in the race (registration\, accommodations and transportation) \nContact: TeamCdLS@CdLSUSA.org or call 800.753.2357
URL:https://www.cdlsusa.org/event/2020-bank-of-america-chicago-marathon/
LOCATION:Chicago\, IL
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/11/20191013_063902-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201007
DTEND;VALUE=DATE:20201008
DTSTAMP:20260404T075004
CREATED:20201002T223901Z
LAST-MODIFIED:20201002T223901Z
UID:3223-1602028800-1602115199@www.cdlsusa.org
SUMMARY:Special Olympics Illinois hosts - Including IL ABLE in Your Special Needs Financial Plan - Part 1
DESCRIPTION:Description: Learn how to put IL ABLE to work for you and/or for your Special Olympics athlete during this 3-part Webinar series. IL ABLE will join Protected Tomorrows as guest presenters from Noon – 1:00 pm Central Time on October 7\, October 14 and October 21. \nPart 1: \n• IL ABLE Account Basics \no Benefits of an ABLE Account\no Eligibility\no Contributing to and spending from an IL ABLE account\no Overview of ABLE programs across the country\no Preview next 2 sessions \nTime: Oct 7\, 2020 12:00 PM in Central Time (US and Canada) \nRegistration Here \nAll three parts of this webinar series will be recorded. If you are unable to attend but would like to receive the information needed to watch the recording\, please register and you will receive this information.
URL:https://www.cdlsusa.org/event/special-olympics-illinois-hosts-including-il-able-in-your-special-needs-financial-plan-part-1/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/10/Three-Part-Webinar-Series-Image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200917T200000
DTEND;TZID=UTC:20200917T210000
DTSTAMP:20260404T075004
CREATED:20200527T002610Z
LAST-MODIFIED:20200527T002610Z
UID:3006-1600372800-1600376400@www.cdlsusa.org
SUMMARY:Parent University: Your Child Is Aging Out … What Now?
DESCRIPTION:Once your child is 22\, they will start receiving social security. Now what? Where will your child live? Where will they work? Navigating the transition period can be overwhelming but also exciting. It’s not just about the place\, it’s about the right home\, continuing education\, job opportunities\, recreation\, and the rest that makes life safe and fulfilling.
URL:https://www.cdlsusa.org/event/parent-university-your-child-is-aging-out-what-now/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/04/Parent-University.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200820T200000
DTEND;TZID=UTC:20200820T210000
DTSTAMP:20260404T075004
CREATED:20200527T002429Z
LAST-MODIFIED:20200527T002730Z
UID:3005-1597953600-1597957200@www.cdlsusa.org
SUMMARY:Parent University: The Recipe for Financial Success
DESCRIPTION:There are a myriad of insurance plans to understand. Health insurance\, life insurance\, disability insurance\, long term care insurance – what to use\, when? What makes sense? The ABLE account rules are so confusing\, and you don’t want to make a mistake. We will review the basics of the ABLE account and how to select the right plan for you. How do we tie these accounts into the rest of our financial plan? Now that you have all the ingredients\, what recipe to we use to make a true cohesive plan and have financial success?
URL:https://www.cdlsusa.org/event/parent-university-the-recipe-for-financial-success/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/04/Parent-University.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200625T120000
DTEND;TZID=UTC:20200626T160000
DTSTAMP:20260404T075004
CREATED:20200527T204243Z
LAST-MODIFIED:20200529T173119Z
UID:3009-1593086400-1593187200@www.cdlsusa.org
SUMMARY:2020 CdLS Foundation Virtual Conference
DESCRIPTION:Join worldwide CLS experts for a two-day virtual conference. Speakers will discuss topics ranging from behavior\, gastrointestinal (GI) challenges\, gene changes and a medical panel featuring the United States Medical Director\, Antonie Kline\, MD. \nViewers can choose to attend one or both days. One-day attendance is $25\, and two-day attendance is $40. Registration opens on May 29 and closes on June 22. \nThis Conference is a great learning opportunity for families; caregivers; medical\, educational and therapeutic professionals; and researchers wanting to learn more about Cornelia de Lange Syndrome (CdLS) and rare disease. \nRegister Now
URL:https://www.cdlsusa.org/event/2020-cdls-foundation-virtual-conference/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/05/Facebook-Post-2020-CdLS-Foundation-Virtual-Conference.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200625
DTEND;VALUE=DATE:20200629
DTSTAMP:20260404T075004
CREATED:20190215T004834Z
LAST-MODIFIED:20200427T214846Z
UID:2087-1593043200-1593388799@www.cdlsusa.org
SUMMARY:CdLS National Family Conference
DESCRIPTION:This event has been CANCELED.   \nWe are excited to announce important information regarding the 2022 CdLS Foundation National Family Conference! The Conference will be held in Tulsa\, OK from June 23-26. \nBe sure to check out all of our information to get your fundraising plans going! 
URL:https://www.cdlsusa.org/event/cdls-national-family-conference/
LOCATION:Marriott Tulsa Hotel\, Southern Hills\, Tulsa\, OK\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/02/tulsa.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200624
DTEND;VALUE=DATE:20200626
DTSTAMP:20260404T075004
CREATED:20190215T005731Z
LAST-MODIFIED:20200320T223759Z
UID:2089-1592956800-1593129599@www.cdlsusa.org
SUMMARY:Ninth Biennial CdLS Scientific & Educational Symposium
DESCRIPTION:This event has been POSTPONED. More details to come.
URL:https://www.cdlsusa.org/event/ninth-biennial-cdls-scientific-educational-symposium/
LOCATION:Marriott Tulsa Hotel\, Southern Hills\, Tulsa\, OK\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/scientific-symposium.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200618T200000
DTEND;TZID=UTC:20200618T210000
DTSTAMP:20260404T075004
CREATED:20200527T002236Z
LAST-MODIFIED:20200527T002236Z
UID:3004-1592510400-1592514000@www.cdlsusa.org
SUMMARY:Parent University: Taking Control of the Legal Mumbo Jumbo
DESCRIPTION:Putting together legal documents is confusing. Legal “talk” sometimes intimidates us. But the real concepts are simple\, and knowing what the legal “talk” means\, how it applies to you and your family\, and what you really need\, is so important to the big picture of the future. Sometimes we need help. The level of help we need it often defined by the kinds of help we need. In this part of the session\, let’s discuss all of the option that we might have and how to think about the realities of guardianship and conservatorship.
URL:https://www.cdlsusa.org/event/parent-university-taking-control-of-the-legal-mumbo-jumbo/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/04/Parent-University.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200503
DTEND;VALUE=DATE:20200504
DTSTAMP:20260404T075004
CREATED:20191115T014235Z
LAST-MODIFIED:20191202T224040Z
UID:2635-1588464000-1588550399@www.cdlsusa.org
SUMMARY:2020 TD Five Boro Bike Tour
DESCRIPTION:Many bicyclists say that biking has changed their lives.\nTeam CdLS bicyclists say that they have changed the lives of others.\nJoin the Cornelia de Lange Syndrome (CdLS) Foundation\nat the TD Five Boro Bike Tour\nSunday\, May 3\, 2020 \nThe CdLS Foundation will be there with you every step of the way\, providing you with:\n• Guaranteed entry and placement in the first Start Wave\n• An official Team CdLS singlet\n• Pre-Race Luncheon\n• VIP Access to the Finish festival\, including gourmet lunch and lounge\n• Pre-Race & Post-Race Dinner\n• Team CdLS Swag Bag\n• Fundraising tools including your own personalized web page\n• Supportive teammates who may turn into life-long friends\n• The satisfaction of knowing you’re helping individuals nationwide\, who have CdLS\nJoin us and you will run away from the race with new friends\, a sense of accomplishment and the satisfaction of making a difference. \nAs a Team CdLS member\, you are provided a guaranteed entry into the TD Five Boro Bike Tour with the understanding that you will meet the race’s requirements to:\n• Commit to raise a minimum of $750 for children with CdLS\n• Pay all fees associated with entering and participating in the race (registration\, accommodations and transportation) \nContact: TeamCdLS@CdLSUSA.org or call 800.753.2357.
URL:https://www.cdlsusa.org/event/2020-td-five-boro-bike-tour/
LOCATION:New York City
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/Team-Starting-Line-3.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200421T153000
DTEND;TZID=UTC:20200421T160000
DTSTAMP:20260404T075004
CREATED:20200416T181325Z
LAST-MODIFIED:20200416T203800Z
UID:2930-1587483000-1587484800@www.cdlsusa.org
SUMMARY:COVID-19 and Individuals with CdLS Webinar
DESCRIPTION:For 39 years\, the CdLS Foundation has been focused on improving the health and well-being of individuals living with CdLS and their families. Now\, as the CdLS community confronts the COVID-19 pandemic\, you are invited to join the Foundation and Drs. Antonie Kline and Soma Jyonouchi for a 30-minute webinar to hear how it affects individuals with CdLS and learn of resources that can help during this public health crisis. \nRegister Here  \n– – – \nDr. Kline joined the CdLS Foundation in 1989\, and in 2001 became Medical Director. In this role\, she oversees the Clinical Advisory Board\, CdLS Clinic for Adolescents and Adults\, the Ask the Expert program\, the biennial Scientific Symposium\, and much more. Since 2000\, Dr. Kline has been Director of Pediatric Genetics at the Harvey Institute of Human Genetics at Greater Baltimore Medical Center. After receiving her undergraduate degree from Wesleyan University in Connecticut\, Dr. Kline completed her medical studies at Jefferson Medical College in Philadelphia. She spent her residency at Sinai Hospital\, where she was Chief Resident. She gained valuable experience in CdLS during a Medical Genetics Fellowship at Jefferson Medical College with Dr. Laird Jackson\, the Foundation’s first medical director. Dr. Kline is currently an Instructor in Pediatrics at Johns Hopkins School of Medicine\, and Clinical Assistant Professor at the University of Maryland School of Medicine. \nDr. Jyonouchi is an Attending Physician with the Division of Allergy and Immunology and the Center for Cornelia de Lange Syndrome and Related Diagnoses at Children’s Hospital of Philadelphia. His areas of expertise include immunodeficiency in Cornelia de Lange syndrome and other genetic syndromes\, and asthma. Dr. Jyonouchi completed his medical studies at the Medical College of Wisconsin in Milwaukee. He spent his residency at Pediatrics – Children’s Hospital and Research Center at Oakland\, Oakland\, CA. Dr. Jyonouchi is a member of the CdLS Foundation’s Clinical Advisory Board (CAB).
URL:https://www.cdlsusa.org/event/covid-19-and-individuals-with-cdls-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/04/COVID-19-Live-Session-Update-SM.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200315
DTEND;VALUE=DATE:20200316
DTSTAMP:20260404T075004
CREATED:20191115T014546Z
LAST-MODIFIED:20191202T222832Z
UID:2636-1584230400-1584316799@www.cdlsusa.org
SUMMARY:2020 United Airlines NYC Half
DESCRIPTION:Many runners say that running has changed their lives.\nTeam CdLS runners say that they have changed the lives of others.\nKick off the running season\nwith the Cornelia de Lange Syndrome (CdLS) Foundation\nat the United Airlines NYC Half Marathon\nSunday\, March 15\, 2020 \nThe CdLS Foundation will be there with you every step of the way\, providing you with:\n• Guaranteed race entry\n• An official Team CdLS singlet\n• Team CdLS Swag Bag\n• Pre-Race Luncheon\n• Weekly training guides sent via email\n• Fundraising tools including your own personalized web page through CrowdRise.com\n• Supportive teammates who may turn into lifelong friends\n• The satisfaction of knowing you’re helping individuals nationwide\, who have CdLS\nJoin us and you will run away from the race with new friends\, a sense of accomplishment and the satisfaction of making a difference. \nAs a Team CdLS member\, you are provided a guaranteed entry into the United Airlines New York City Half Marathon with the understanding that you will meet the race’s requirements to:\n• Commit to raise a minimum of $1\,000 for children with CdLS\n• Pay all fees associated with entering and participating in the race (registration\, accommodations and transportation) \nContact: TeamCdLS@CdLSUSA.org or call 800.753.2357 \nAbout the United Airlines NYC Half Marathon:\n• The United Airlines NYC Half marathon will take participants on 13.1 mile run starting in Prospect Park in Brooklyn\, over the Manhattan Bridge\, and finishing in Central Park.\n• Runners will pass by many of New York City’s most popular sights\, including Grand Army Plaza\, the United Nations\, Grand Central Terminal\, Times Square\, and Central Park.\n• Led by a talent-packed roster of American and international elites\nAdditional race information is available on the United Airline NYC Half website.
URL:https://www.cdlsusa.org/event/2020-united-airlines-nyc-half/
LOCATION:New York City
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/Team-Photo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200311T080000
DTEND;TZID=UTC:20200311T120000
DTSTAMP:20260404T075004
CREATED:20190917T233926Z
LAST-MODIFIED:20190917T234138Z
UID:2528-1583913600-1583928000@www.cdlsusa.org
SUMMARY:CdLS Clinic at Shriner's Hospital
DESCRIPTION:Shriners Hospital for Children-Salt Lake City\, Utah will have their annual Cornelia de Lange Syndrome Clinic March 11\, 2020 from 8 am – 12 pm with a range of specialists available just for children with CdLS (new patients must be age 18 and younger). The specialties will include the following: pediatric orthopeadics\, eyes ears nose and throat\, gastrointestinal\, pediatrics\, neurology\, genetics\, the orthotics and prosthetic lab\, and physical and occupational therapy services. \nShriners Hospital for Children-Salt Lake City has been helping children with orthopaedic needs regardless of ability to pay since 1925. If you are interested in this clinic please contact Lynn Audette\, L.M.S.W.\, Family Service Coordinator at 1-800-223-8355 or families@CdLSusa.org.
URL:https://www.cdlsusa.org/event/cdls-clinic-at-shriners-hospital/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/shriners.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20200111T080000
DTEND;TZID=UTC:20200111T120000
DTSTAMP:20260404T075004
CREATED:20191213T191414Z
LAST-MODIFIED:20191213T191730Z
UID:2690-1578729600-1578744000@www.cdlsusa.org
SUMMARY:CdLS Clinic at St. Louis Children’s Hospital
DESCRIPTION:St. Louis Children’s Hospital in St. Louis\, Missouri will host their second Cornelia de Lange Syndrome clinic.\n\nThe specialties in attendance will include the following: genetics\, neurology\, ophthalmology\, audiology/ear\, nose and throat\, and psychology.\nFor further details\, contact Whitney Rinaldi\, BSW\, at familyservice@CdLSusa.org
URL:https://www.cdlsusa.org/event/cdls-clinic-at-st-louis-childrens-hospital/
LOCATION:St. Louis Children’s Hospital\, 1 Children's Place\, St. Louis\, MO\, 63127\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/stlouis.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191103
DTEND;VALUE=DATE:20191104
DTSTAMP:20260404T075004
CREATED:20181026T003311Z
LAST-MODIFIED:20190201T030659Z
UID:1616-1572739200-1572825599@www.cdlsusa.org
SUMMARY:TCS New York City Marathon
DESCRIPTION:TEAM CdLS REGISTRATION BEGINS WEDNESDAY\, FEBRUARY 27\, 2019\nContact Kristi Larson to express your intentions\nA smile from a child with CdLS inspires Team CdLS runners to turn their love of the sport into a passion to help raise funds for the hundreds of individuals that have this little- known syndrome. There is no cure. As a Team CdLS member\, you are provided a guaranteed entry into the TCS New York City Marathon with the understanding that you will meet the race’s requirements to: \n\nCommit to raise a minimum of $2\,500 for individuals with CdLS\nPay all fees associated with entering and participating in the race (registration\, accommodations and transportation)\n\n  \nTeam CdLS amenities include: \n\nGuaranteed race entry\nWeekly training guides sent via email\nFundraising tools including your own personalized Web page through CrowdRise.com\nDedicated staff to provide guidance and Team CdLS branded materials\nTeam CdLS singlet\nPre-Race Luncheon\nRace day support\nTeam CdLS swag bag\nThe satisfaction that you have helped individuals with CdLS and their families\n\nTo register for the TCS New York City Marathon as a Team CdLS runner\, email Kristi or call 800-753-2357. Team CdLS also welcomes runners who entered through the lottery or otherwise qualified. \n2019 TCS New York City Marathon Processing and Entry Fees: \n\nU.S. residents (those who live in the 50 United States or the District of Columbia)\nNYRR members: US $255\nNon-members: US $295\nNon-U.S. residents (including Puerto Rico and other U.S. territories): US $358\n\nEntry fees will be charged upon acceptance. Once you have been accepted\, your entry fees are non-transferable under any and all circumstances\, and are also non-refundable under any and all circumstances except in the event of cancellation of the marathon. \nIncluded in the entry fee\, provided by the Foundation \nTCS New York City Marathon: \n\nEntry to the 2019 TCS New York City Marathon (including fluid/fueling stations\, medical support\, entertainment\, bag-check handling\,* security\, and more)\nRunner “goody bag” including official New Balance technical shirt and official TCS New York City Marathon Program magazine.\nOfficial transportation to the start from Midtown Manhattan\, Lower Manhattan\, or the Meadowlands Sports Complex (New Jersey)**\nStart festival\, including breakfast and entertainment.\nFinisher materials: medal\, food\, beverages\, Heatsheet™\, official results magazine\n\n  \nInterested in supporting the team without getting dirty? Give a one-time donation. Click here and select Team CdLS in the donation type. Make sure you mention NYC Marathon on the form.
URL:https://www.cdlsusa.org/event/tcs-new-york-city-marathon-2/
LOCATION:New York City
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/20181103_145043.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191102
DTEND;VALUE=DATE:20191103
DTSTAMP:20260404T075004
CREATED:20181022T194303Z
LAST-MODIFIED:20190124T235448Z
UID:1322-1572652800-1572739199@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 Pediatric Genetics at the Harvey Institute for Human Genetics at GBMC\, has led these free clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. Clinics occur each spring and fall and can accommodate up to eight individuals. A Family Service Coordinator from the Foundation always attends to provide support. \nParticipants receive one-to-one consultations with specialists from pediatric ophthalmology\, gynecology\, pediatric dentistry\, genetics\, gastroenterology and nutrition\, psychiatry and behavioral psychology.
URL:https://www.cdlsusa.org/event/multidisciplinary-clinic-for-adolescents-and-adults-2/
LOCATION:Harvey Institute for Human Genetics\, Greater Baltimore Medical Center\, 6701 N. Charles St.\, Suite 2326\, Baltimore\, MD\, 21204\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20191023T120000
DTEND;TZID=UTC:20191023T140000
DTSTAMP:20260404T075004
CREATED:20190920T200635Z
LAST-MODIFIED:20190920T200635Z
UID:2541-1571832000-1571839200@www.cdlsusa.org
SUMMARY:Retiring for 3 Webinar
DESCRIPTION:Mary Anne Ehlert will be presenting an in depth look at what Retiring for 3 means: \n\nHow much do you need and how much does your child need?\nWhen should you take Social Security?\nDoes Medicare matter enough to take your Social Security sooner?\nWhat will your child get in Social Security and when?\nWhat else changes for your child when You retire?\nDoes your pension impact your child’s benefits?
URL:https://www.cdlsusa.org/event/retiring-for-3-webinar/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/04/Webinar-AdobeStock_96932096-e1518107185168.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191019
DTEND;VALUE=DATE:20191020
DTSTAMP:20260404T075004
CREATED:20181026T003239Z
LAST-MODIFIED:20190820T174449Z
UID:1614-1571443200-1571529599@www.cdlsusa.org
SUMMARY:2019 Baltimore Running Festival
DESCRIPTION:Virtual coaching\, tee shirt\, pre-race dinner with pizza and pasta and a view of beautiful Baltimore!
URL:https://www.cdlsusa.org/event/2019-baltimore-running-festival/
LOCATION:Baltimore
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/IMG_4551.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191013
DTEND;VALUE=DATE:20191014
DTSTAMP:20260404T075004
CREATED:20181026T003122Z
LAST-MODIFIED:20181128T020039Z
UID:1612-1570924800-1571011199@www.cdlsusa.org
SUMMARY:2019 Bank of America Chicago Marathon
DESCRIPTION:Many runners say that running has changed their lives. \nTeam CdLS runners say that they have changed the lives of others.\nJoin the Cornelia de Lange Syndrome (CdLS) Foundation\nat the\nworld-renowned Bank of America Chicago Marathon\nSunday\, October 13\, 2019 \nThe CdLS Foundation will be there with you every step of the way\, providing you with:\n• Guaranteed race entry\n• Complimentary entry to the Balbo Hospitality Tent\n• An official Team CdLS singlet\n• Pre-Race & Post-Race Dinner\n• Team CdLS Swag Bag\n• Weekly training guides sent via email\n• Fundraising tools including your own personalized web page\n• Supportive teammates who may turn into life long friends\n• The satisfaction of knowing you’re helping individuals nationwide\, who have CdLS\nJoin us and you will run away from the race with new friends\, a sense of accomplishment and the satisfaction of making a difference. \nAs a Team CdLS member\, you are provided a guaranteed entry into the Bank of America Chicago Marathon with the understanding that you will meet the race’s requirements to:\n• Commit to raise a minimum of $1\,500 for children with CdLS\n• Pay all fees associated with entering and participating in the race (registration\, accommodations and transportation) \nContact: TeamCdLS@CdLSUSA.org or call 800.753.2357
URL:https://www.cdlsusa.org/event/2019-bank-of-america-chicago-marathon/
LOCATION:Chicago
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/Team-CdLS-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191007
DTEND;VALUE=DATE:20191008
DTSTAMP:20260404T075004
CREATED:20190607T005826Z
LAST-MODIFIED:20190607T005826Z
UID:2346-1570406400-1570492799@www.cdlsusa.org
SUMMARY:Missouri Charity Golf Tournament
DESCRIPTION:
URL:https://www.cdlsusa.org/event/missouri-charity-golf-tournament/
LOCATION:Tapawingo Golf Course\, 13001 Gary Player Dr\, St. Louis\, MO\, 63127\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/06/mo-golf.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20191005T170000
DTEND;TZID=UTC:20191005T203000
DTSTAMP:20260404T075004
CREATED:20190910T224350Z
LAST-MODIFIED:20190910T224350Z
UID:2518-1570294800-1570307400@www.cdlsusa.org
SUMMARY:Brew & BBQ
DESCRIPTION:Join us for the 10th Annual Brew & BBQ for CdLS. Tickets: $35 in advance/$40 at the door Includes BBQ\, 2 beer tickets & LIVE music. Cash bar available. \nBid on our silent auction both online and LIVE! @ www.biddingowl.com/brewandbbqforcdls
URL:https://www.cdlsusa.org/event/brew-bbq/
LOCATION:Currahee Brewing Company\, 25 South Main Street\, Alpharetta\, GA\, 30009\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2019/09/BBQ-Logo-2019.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20191005T110000
DTEND;TZID=UTC:20191005T150000
DTSTAMP:20260404T075004
CREATED:20190807T192855Z
LAST-MODIFIED:20190807T192855Z
UID:2464-1570273200-1570287600@www.cdlsusa.org
SUMMARY:Northwest Family Gathering
DESCRIPTION:
URL:https://www.cdlsusa.org/event/northwest-family-gathering/
LOCATION:Valley Ridge Community Center\, 4644 S 188th St\, SeaTac\, WA\, 98188\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/08/wa-gathering.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190919T120000
DTEND;TZID=UTC:20190919T130000
DTSTAMP:20260404T075004
CREATED:20190821T213911Z
LAST-MODIFIED:20190821T213943Z
UID:2491-1568894400-1568898000@www.cdlsusa.org
SUMMARY:CdLS Conference Fundraising Tips Webinar
DESCRIPTION:With the National Family Conference approaching in just under 10 months\, now is the time to plan and save. Tasha Howland\, Life Coach and mom to Peyton\, will offer tips and strategies that you may find helpful to cover your expenses for Conference. She will also offer some fun ideas to help you get started on your way to your goals! \nPresenter: Tasha Howland\, Life Coach\, Youth Coaching Institute. Tasha empowers women and families to be the best advocates for their children with special needs. One of her three children has CdLS. She is an active parent with the CdLS Foundation and co-chair for Team CdLS Baltimore. Tasha holds a Bachelor’s Degree in Political Science from Bethune Cookman University and her Project Management Professional (PMP) from the Project Management Institute in Maryland.
URL:https://www.cdlsusa.org/event/cdls-conference-fundraising-tips/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/04/Webinar-AdobeStock_96932096-e1518107185168.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190817
DTEND;VALUE=DATE:20190818
DTSTAMP:20260404T075004
CREATED:20190320T003152Z
LAST-MODIFIED:20190606T234510Z
UID:2187-1566000000-1566086399@www.cdlsusa.org
SUMMARY:Missouri Family Gathering
DESCRIPTION:Hosted by the Rauba Family \nFor more information contact Lynn Audette at families@CdLSusa.org
URL:https://www.cdlsusa.org/event/missouri-family-gathering/
LOCATION:Wonderland Camp\, 18591 Miller Circle\, Rocky Mount\, MO\, 65072\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/02/Group-Photo.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190731T130000
DTEND;TZID=UTC:20190731T140000
DTSTAMP:20260404T075004
CREATED:20190614T185244Z
LAST-MODIFIED:20190614T185244Z
UID:2361-1564578000-1564581600@www.cdlsusa.org
SUMMARY:Gastrointestinal (GI) Challenges: Critical Care and Treatment Approaches
DESCRIPTION:This webinar will: \n\nIdentify malrotation\nDiscuss signs of volvulus\nDiscuss bowel obstruction\nDiscuss pancreatitis\nReview treatment/care approaches to the above\n\nPresenter: Carol Potter\, MD\, Nationwide Children’s Hospital
URL:https://www.cdlsusa.org/event/gastrointestinal-gi-challenges-critical-care-and-treatment-approaches/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/04/Webinar-AdobeStock_96932096-e1518107185168.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190727T120000
DTEND;TZID=UTC:20190727T150000
DTSTAMP:20260404T075004
CREATED:20190626T012406Z
LAST-MODIFIED:20190626T012700Z
UID:2391-1564228800-1564239600@www.cdlsusa.org
SUMMARY:Virginia Family Gathering
DESCRIPTION:Families are asked to bring a dish to share potluck style. \nEveryone is welcome! \nPlease RSVP by 7.19.19 with the number of adults/children that will be attending \nYou may email Paula Messer at pmroncales@verizon.net or Emily Muñoz at elbrummitt@gmail.com or Whitney Rinaldi\, Family Service Coordinator at the CdLS Foundation 1.800.753.2357 or Familyservice@cdlsusa.org
URL:https://www.cdlsusa.org/event/virginia-family-gathering/
LOCATION:Lambert’s Point Rec Center\, 4100 Bowdens Ferry Rd.\, Norfolk\, VA\, 23508\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/01/Savannah-Grazier-Briley-Svee-with-moms.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190622T160000
DTEND;TZID=UTC:20190622T190000
DTSTAMP:20260404T075004
CREATED:20190425T174950Z
LAST-MODIFIED:20190425T174950Z
UID:2276-1561219200-1561230000@www.cdlsusa.org
SUMMARY:Northwest Illinois Family Gathering
DESCRIPTION:
URL:https://www.cdlsusa.org/event/northwest-illinois-family-gathering/
LOCATION:Burning Bush Community Center\, 1313 N. Burning Bush\, Mount Prospect\, IL\, 60056\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190613T120000
DTEND;TZID=UTC:20190613T130000
DTSTAMP:20260404T075004
CREATED:20190520T220943Z
LAST-MODIFIED:20190520T221111Z
UID:2324-1560427200-1560430800@www.cdlsusa.org
SUMMARY:Neurodevelopmental Disorders and Behavioral Management in CdLS Webinar
DESCRIPTION:This webinar will provide an overview of neurodevelopmental challenges\, including approaches to treatment\, in Cornelia de Lange syndrome (CdLS). Individuals with CdLS can be affected by a number of developmental disorders\, including intellectual disability\, autism spectrum disorder\, language disorder\, ADHD\, aggression\, repetitive self-injurious behaviors\, anxiety\, and depression. This webinar will discuss each of these domains as it relates to CdLS\, as well as strategies for pharmacological intervention.\n\nPresenter: Siddarth Srivastava\, M.D.\, Ph.D.\, Boston Children’s Hospital
URL:https://www.cdlsusa.org/event/neurodevelopmental-disorders-and-behavioral-management-in-cdls-webinar/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/04/Webinar-AdobeStock_96932096-e1518107185168.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190520
DTEND;VALUE=DATE:20190521
DTSTAMP:20260404T075004
CREATED:20181026T003016Z
LAST-MODIFIED:20190429T193934Z
UID:1611-1558310400-1558396799@www.cdlsusa.org
SUMMARY:New England Charity Golf Tournament
DESCRIPTION:Join us and other families in New England to celebrate the 27th Annual CdLS Foundation New England Golf Tournament. The tournament takes place at the Ipswich Country Club in Ipswich\, MA. Participants will enjoy 18 holes of golf\, brunch\, dinner and an opportunity to win both skill and door prizes. \nRegister for the golf tournament here.
URL:https://www.cdlsusa.org/event/new-england-charity-golf-tournament/
LOCATION:Ipswich Country Club\, 148 Country Club Way\, Ipswich\, MA\, 01938\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/IMG_4306.jpg
END:VEVENT
END:VCALENDAR