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X-ORIGINAL-URL:https://www.cdlsusa.org
X-WR-CALDESC:Events for CdLS Foundation
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DTSTART:20200101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20210222T190000
DTEND;TZID=UTC:20210222T190000
DTSTAMP:20260403T150258
CREATED:20210220T002150Z
LAST-MODIFIED:20210220T002406Z
UID:3557-1614020400-1614020400@www.cdlsusa.org
SUMMARY:Choosing Resiliency in the Face of Adversity
DESCRIPTION:How do we process an unexpected\, life-altering event or circumstance? How do our choices and decisions have bearing on the outcome? Join CPN’s Blyth Taylor Lord and Facebook COO Sheryl Sandberg for a candid discussion of how these experiences shape us\, and how to move forward with maximum healing and minimal regret. \nThis event is hosted by National Tay-Sachs and Allied Diseases as part of their Family Connection Webinar Series. \nREGISTER for Choosing Resiliency
URL:https://www.cdlsusa.org/event/choosing-resiliency-in-the-face-of-adversity/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2021/02/unnamed.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210228
DTEND;VALUE=DATE:20210301
DTSTAMP:20260403T150258
CREATED:20210205T234613Z
LAST-MODIFIED:20210205T234613Z
UID:3478-1614470400-1614556799@www.cdlsusa.org
SUMMARY:Rare Disease Day
DESCRIPTION:Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. \nThere are so many different ways to get involved on Rare Disease Day!
URL:https://www.cdlsusa.org/event/rare-disease-day/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2021/02/NORD_-RDD_SYS_800x800.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210310T090000
DTEND;TZID=UTC:20210310T153000
DTSTAMP:20260403T150258
CREATED:20210304T005241Z
LAST-MODIFIED:20210304T005449Z
UID:3595-1615366800-1615390200@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 third Cornelia de Lange Syndrome clinic. The specialties in attendance will include the following: ENT\, Genetics\, Neurology\, Orthopedics\, Physical Therapy\, Occupational Therapy\, Nutrition and Social Work.\n\nFor more information contact Alisicia Jackson.
URL:https://www.cdlsusa.org/event/cdls-clinic-at-st-louis-childrens-hospital-2/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/stlouis.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210318T200000
DTEND;TZID=UTC:20210318T200000
DTSTAMP:20260403T150258
CREATED:20201228T184431Z
LAST-MODIFIED:20201228T184824Z
UID:3391-1616097600-1616097600@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University: Recordkeeping 101: Finances\, Taxes and Special Needs Trust
DESCRIPTION:The key to financial success is keeping good financial records.  With insurance\, government benefits\, investments\, and taxes\, this can become quite overwhelming.  We will work together to identify ways for you to keep your records current\, accurate\, and complete.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-recordkeeping-101-finances-taxes-and-special-needs-trust/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210331T200000
DTEND;TZID=UTC:20210331T210000
DTSTAMP:20260403T150258
CREATED:20210304T194555Z
LAST-MODIFIED:20210304T194608Z
UID:3602-1617220800-1617224400@www.cdlsusa.org
SUMMARY:Transitioning to Adulthood: When the Dependent Child Reaches Adulthood
DESCRIPTION:Parenting is a lifelong process\, and it is particularly so for parents of children diagnosed with a serious illness\, where the child’s chronological age may not correspond with their developmental age. New challenges emerge as a child grows older and bigger. Pediatric providers or facilities may raise concerns about the ability to continue caring for your child. Services available for your child may change based on the chronological age without regard to the continued needs. How do you navigate? Come hear from parents who navigated their way. \nRegister here.
URL:https://www.cdlsusa.org/event/transitioning-to-adulthood-when-the-dependent-child-reaches-adulthood/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/03/CPN-stacked-logo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210410T100000
DTEND;TZID=UTC:20210410T170000
DTSTAMP:20260403T150258
CREATED:20210122T204052Z
LAST-MODIFIED:20210402T001302Z
UID:3429-1618048800-1618074000@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. This year the clinic will be virtual. \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 virtual clinic or to secure your spot\,\ncontact Deirdre Summa or call 860.676.8166.
URL:https://www.cdlsusa.org/event/multidisciplinary-clinic-for-adolescents-and-adults-4/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210421T140000
DTEND;TZID=UTC:20210421T150000
DTSTAMP:20260403T150258
CREATED:20210419T185131Z
LAST-MODIFIED:20210419T185131Z
UID:3739-1619013600-1619017200@www.cdlsusa.org
SUMMARY:Transitioning to Adult Care
DESCRIPTION:As rare disease patients approach adulthood\, they face the transition from parent-supervised pediatric care to more independent adult models whereby they take ownership of their care. This change can seem daunting for patients and parents\, especially when dealing with rare disorders that involve multiple specialists that may be part of a care team. \nJoin us to learn how to plan for this change and to hear from a mother and son\, who will share their experiences transitioning from pediatric to adult care as a family living with Congenital Bilateral Perisylvian Syndrome (CBPS). \nThis webinar is intended for patients\, caregivers\, medical professionals\, students and the general public.
URL:https://www.cdlsusa.org/event/transitioning-to-adult-care/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/04/NRD2034RegistrationHeaderAdultCare300x751.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210422T200000
DTEND;TZID=UTC:20210422T200000
DTSTAMP:20260403T150258
CREATED:20201228T184944Z
LAST-MODIFIED:20201228T184944Z
UID:3392-1619121600-1619121600@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University: Important Things to Know About Guardianship
DESCRIPTION:Guardianship is a legal process and used when a person can no longer make or communicate safe or sound decisions about his/her person and/or property. Before establishing a guardianship\, you might consider other alternatives which we will discussed. What are the alternatives to guardianship? What individual rights are affected by a guardianship? What are the duties and responsibilities of guardianship? What are the benefits and downfalls to becoming my child’s guardian?
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-important-things-to-know-about-guardianship/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210508
DTEND;VALUE=DATE:20210509
DTSTAMP:20260403T150258
CREATED:20210206T000001Z
LAST-MODIFIED:20210206T000117Z
UID:3482-1620432000-1620518399@www.cdlsusa.org
SUMMARY:CdLS Awareness Day
DESCRIPTION: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/cdls-awareness-day/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/logo-heart-with-words.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210513T200000
DTEND;TZID=UTC:20210513T200000
DTSTAMP:20260403T150258
CREATED:20201228T185104Z
LAST-MODIFIED:20201228T185104Z
UID:3393-1620936000-1620936000@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University: Integrating Special Needs with Your Estate & Financial Plans
DESCRIPTION:You spend so much time and effort creating the Future Life Care Plan for your family member with special needs.  Your estate and financial plans cannot be like everyone else’s.  You need to have special documents\, very specific language with beneficiaries\, special thought processes for your own retirement planning\, specific tools to use that are not always widely known by professionals\, extra special people and teams that will support your family member’s future and more.  We will work through a checklist of many of the unique needs you will want to include in your planning.  This class will highlight the many opportunities you have to make the future look brighter.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-integrating-special-needs-with-your-estate-financial-plans/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210515T083000
DTEND;TZID=UTC:20210515T140000
DTSTAMP:20260403T150258
CREATED:20210504T192554Z
LAST-MODIFIED:20210504T192728Z
UID:3777-1621067400-1621087200@www.cdlsusa.org
SUMMARY:SFN Dads Virtual Conference
DESCRIPTION:The SFN Dads Virtual Conference is for dads raising children with special needs\, interested in: \n\n\n    – developing their fathering skills\n– gathering resources for their child and family\, and\n– meeting and networking with like- minded dads \n\nSome of the guest speakers will include: Mary Anne Ehlert\, David Hirsch\, Joe Mantegna\, Wayne Messmer\, and Rob Johnson. \n\n\nSome agenda topics will include: Being Emotionally Present\, Housing & Residential Issues\, Sibling & Family Balance\, Respite & Marriage\, Grieving the Anticipated Life\, Estate & Financial Planning\, Education Beyond High School\, Losing a Child\, and Overcoming Denial. \n\nRegister Here
URL:https://www.cdlsusa.org/event/sfn-dads-virtual-conference/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/05/2d2636940135aa8f22675ac9c6697d79.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210516
DTEND;VALUE=DATE:20210517
DTSTAMP:20260403T150258
CREATED:20210429T212448Z
LAST-MODIFIED:20210429T222945Z
UID:3762-1621123200-1621209599@www.cdlsusa.org
SUMMARY:CdLS Race to Tulsa
DESCRIPTION:Join the Local Planning Committee for a virtual race benefiting CdLS. Cornelia de Lange Syndrome or CdLS is a rare genetic syndrome that causes a broad range of physical\, cognitive\, and medical challenges for the diagnosed individual. Every two years the CdLS Foundation hosts a Family Conference where individuals with CdLS and their families from around the world can attend to learn about CdLS\, how to care for individuals with CdLS\, seek medical advice with multiple specialists\, and bond with other families similar to their own. All proceeds from this virtual race will be donated to the 2022 Family Conference located in Tulsa\, OK. \nThis virtual race is a fun run with different race options (1K\, 5K\, 10K) making it a perfect activity for individuals or the whole family. Some great swag is included such as a custom medal and printable race bib. You can post your results and upload photos online to share your experience. Don’t want to walk/run\, but still contribute to this great cause? Donations can be made using the donation button and are always welcomed! Grab your friends and family to race from your place to Tulsa\, OK! \nIf you have any questions about this race\, please contact the race director at cdlsconferencelpc@gmail.com.
URL:https://www.cdlsusa.org/event/cdls-race-to-tulsa/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/04/CdLS-Race-to-Tulsa-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210605T140000
DTEND;TZID=UTC:20210605T160000
DTSTAMP:20260403T150258
CREATED:20210429T212703Z
LAST-MODIFIED:20210429T212703Z
UID:3765-1622901600-1622908800@www.cdlsusa.org
SUMMARY:California Virtual Family Gathering
DESCRIPTION:Please join us for a California Virtual Family Gathering. Hosted by the CdLS Foundation Family Service and RCs Karen Prada\, Melissa Staggs\, Susan Drexler and Dena Davis. \nSend a photo via email if you would like your child/family in the slide show. \nSaturday\, June 5th\, 11 a.m. – 1 p.m. PST. \nThis gathering will be held via Zoom. \nRSVP to Alisicia Jackson at families@CdLSusa.org.
URL:https://www.cdlsusa.org/event/california-virtual-family-gathering/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/04/CA-Gathering-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210617T190000
DTEND;TZID=UTC:20210617T190000
DTSTAMP:20260403T150258
CREATED:20201228T185205Z
LAST-MODIFIED:20201228T185205Z
UID:3394-1623956400-1623956400@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University: Corporate Trustee 101: What They Are and Why They Are Important
DESCRIPTION:A very important component of the Future Life Care Plan is the Special Needs Trust.  The careful selection of those who will make sure your goals for the Special Needs Trust implementation is key to the smooth transition and the future happiness and safety of your family member.   Making sure your Successor Trustees are qualified\, caring\, and able to fulfill their responsibilities will provide you peace of mind for the future.  We take a closer look at the best qualities for a Trustee/Trustees\, a Trustee duties/job\, how to identify potential trustees\, recognize the responsibility – does the trustee have what it takes? and the benefits of naming a professional or corporate trustee.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-corporate-trustee-101-what-they-are-and-why-they-are-important/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210625T130000
DTEND;TZID=UTC:20210625T150000
DTSTAMP:20260403T150258
CREATED:20210528T164353Z
LAST-MODIFIED:20210528T164353Z
UID:3877-1624626000-1624633200@www.cdlsusa.org
SUMMARY:Hit the Trail for CdLS
DESCRIPTION:Come and Celebrate with us! Join members of the CdLS Foundation Board of Directors and staff as we salute 40 years of supporting our families\, while raising money and enjoying the beautiful and scenic Farmington Valley Greenway Rail Train in Avon\, CT. You won’t want to miss this very special 40th Kick Off event on June 25th! \nFor more information\, contact Annette Scheidecker at events@CdLSusa.org.
URL:https://www.cdlsusa.org/event/hit-the-trail-for-cdls/
LOCATION:Farmington Valley Greenway Trail
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/05/Hit-the-Trails-Option-Images-1-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210627T120000
DTEND;TZID=UTC:20210627T150000
DTSTAMP:20260403T150258
CREATED:20210528T163744Z
LAST-MODIFIED:20210528T163744Z
UID:3872-1624795200-1624806000@www.cdlsusa.org
SUMMARY:Illinois Family Gathering
DESCRIPTION:Hosted by Charyn Beaumont\, Families can stay the whole time or just drop by if they would like. It will be located under the red and white striped tent at Heritage Park in Wheeling. The sign up genius created is where you can sign up to bring desserts/drinks/snacks. Deli/Sub sandwiches will be provided.
URL:https://www.cdlsusa.org/event/illinois-family-gathering/
LOCATION:Heritage Park 1 Community Blvd Wheeling\, IL 60090\, 1 Community Blvd\, Wheeling\, IL\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/05/IL-Gathering-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210715T200000
DTEND;TZID=UTC:20210715T200000
DTSTAMP:20260403T150258
CREATED:20201228T185256Z
LAST-MODIFIED:20201228T185256Z
UID:3395-1626379200-1626379200@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University: Ways to Support Siblings in Special Needs Families
DESCRIPTION:Having a sibling with special needs is a reality many children are born into.  The advantages to having a sibling with special needs are numerous and include being more empathetic\, more responsible and more resilient. However\, these siblings also shoulder tremendous burdens that are not often or easily discussed.  We will talk about the role siblings play in day-to-day life and how to include\, educate\, and support them.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-ways-to-support-siblings-in-special-needs-families/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210819T200000
DTEND;TZID=UTC:20210819T200000
DTSTAMP:20260403T150258
CREATED:20201228T185404Z
LAST-MODIFIED:20201228T185404Z
UID:3396-1629403200-1629403200@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University: Transition Programs & Schools – What is the Right Choice?
DESCRIPTION:Finding the transition program that best meets the needs of your child with a disability is so important.  We will discuss the different types of programs\, what type of program is best for your child\, what types of community-based programs are out there\, what programs will benefit your child\, and how can you fund the programs your child attends.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-transition-programs-schools-what-is-the-right-choice/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20210923T200000
DTEND;TZID=UTC:20210923T200000
DTSTAMP:20260403T150258
CREATED:20201228T185507Z
LAST-MODIFIED:20201228T185507Z
UID:3397-1632427200-1632427200@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University: Keeping “The Dream Team” Alive
DESCRIPTION:We will continue discussing the importance of The Dream Team and choosing the right people for the right job to ensure your child’s future success!  We will talk more in-depth about how to build this team and keep moving them forward – making it easier for your future caregiver and educating your trustee.  We will go to the NEXT LEVEL in your utilization of the Dream Team Plan to make it a reality.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-keeping-the-dream-team-alive/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210927
DTEND;VALUE=DATE:20210928
DTSTAMP:20260403T150258
CREATED:20210305T015719Z
LAST-MODIFIED:20210826T013812Z
UID:3613-1632700800-1632787199@www.cdlsusa.org
SUMMARY:New England Charity Golf Tournament
DESCRIPTION:The CdLS Foundation New England Golf Classic is set for Monday\, September 27\, 2021\, in Ipswich\, MA. Registration and breakfast begin at 7:45am with a 9am shotgun start\, followed by cocktails\, lunch\, awards and prizes at 1:30pm. \nWe missed this event last Spring due to the pandemic\, and decided this year to move the event from May to September just to be safe. So\, you haven’t missed it! To register as a player\, a foursome or as a sponsor go to our new New England Golf website.
URL:https://www.cdlsusa.org/event/new-england-charity-golf-tournament-2/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/03/ne-golf.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211009
DTEND;VALUE=DATE:20211010
DTSTAMP:20260403T150258
CREATED:20210304T014206Z
LAST-MODIFIED:20210304T014206Z
UID:3598-1633737600-1633823999@www.cdlsusa.org
SUMMARY:2021 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/2021-baltimore-running-festival/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/IMG_4551.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211010
DTEND;VALUE=DATE:20211011
DTSTAMP:20260403T150258
CREATED:20210304T012112Z
LAST-MODIFIED:20210304T013827Z
UID:3597-1633824000-1633910399@www.cdlsusa.org
SUMMARY:2021 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 10\, 2021 \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/2021-bank-of-america-chicago-marathon/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/11/20191013_063902-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211011
DTEND;VALUE=DATE:20211012
DTSTAMP:20260403T150258
CREATED:20210305T015337Z
LAST-MODIFIED:20210826T014032Z
UID:3612-1633910400-1633996799@www.cdlsusa.org
SUMMARY:Missouri Charity Golf Tournament
DESCRIPTION:The Amber Gaines Memorial Golf Classic is scheduled for Monday\, October 11th 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 is the 33rd annual Foundation golf tournament in MO. It was renamed the Amber Gaines Memorial Golf Classic last year in tribute to Amber Gaines\, who had CdLS\, and sadly passed away last year at the age of 38. Amber was the inspiration for the tournament more than three decades ago. To register as a player\, a foursome or a sponsor for the golf outing in MO\, go to the Amber Gaines Golf Classic website.
URL:https://www.cdlsusa.org/event/missouri-charity-golf-tournament-3/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/06/mo-golf.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20211021T200000
DTEND;TZID=UTC:20211021T200000
DTSTAMP:20260403T150258
CREATED:20201228T185616Z
LAST-MODIFIED:20201228T185616Z
UID:3398-1634846400-1634846400@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University: What Residential Option Is Right for Your Family?
DESCRIPTION:Today\, many people with special needs live in some type of community setting.  With many housing options to choose from\, how do you choose the right one for your child.  We will discuss many of the options available: CILA\, group home\, living at home with parents or other family members\, single family home with other adults funded by the parents?
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-what-residential-option-is-right-for-your-family/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211106
DTEND;VALUE=DATE:20211107
DTSTAMP:20260403T150258
CREATED:20210614T190730Z
LAST-MODIFIED:20210614T195804Z
UID:3911-1636156800-1636243199@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-6/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20211107
DTEND;VALUE=DATE:20211108
DTSTAMP:20260403T150258
CREATED:20210304T015259Z
LAST-MODIFIED:20210304T021230Z
UID:3599-1636243200-1636329599@www.cdlsusa.org
SUMMARY:TCS New York City Marathon
DESCRIPTION:A 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 Annette or call 800-753-2357. Team CdLS also welcomes runners who entered through the lottery or otherwise qualified. \n2021 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 2021 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-3/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/team-cdls-logo-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20211118T200000
DTEND;TZID=UTC:20211118T200000
DTSTAMP:20260403T150258
CREATED:20201228T185738Z
LAST-MODIFIED:20201228T185738Z
UID:3399-1637265600-1637265600@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University: 2021 Parent University™ – A Year in Review
DESCRIPTION:We have worked all year to take next steps.  But it is easy to get caught in THE GAP. Sometimes\, when we are working toward a big goal\, we only see all that is still in front of us. Let’s turn around and review the whole year and see how far you have come in your planning and let’s close THE GAP. You will then see the real progress you have made for your family’s future. Then you can be energized as you develop new goals for 2022.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-2021-parent-university-a-year-in-review/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220212
DTEND;VALUE=DATE:20220213
DTSTAMP:20260403T150258
CREATED:20210826T020056Z
LAST-MODIFIED:20210826T020056Z
UID:5777-1644624000-1644710399@www.cdlsusa.org
SUMMARY:CdLS Remembrance Day
DESCRIPTION:Losing a loved one with CdLS at any age can be life-altering. Parents\, siblings\, relatives and friends feel tremendous loss and many times have a difficult time understanding why. It is so important that we as a community surround them with support and unconditional love. Although they have lost their child\, grandchild or sibling – they still belong and will forever be part of our journey. \nOn February 12th\, we will be celebrating CdLS Remembrance Day. We ask that our fellow CdLS community members partake in this special day with us to show solidarity with families who no longer have loved ones with them. \nPlease take a moment to remember everyone with CdLS who has died over the years. \nFor more information contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/cdls-remembrance-day/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/02/CdLS-Angels-Day-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220212
DTEND;VALUE=DATE:20220213
DTSTAMP:20260403T150258
CREATED:20210826T020606Z
LAST-MODIFIED:20210826T020606Z
UID:5778-1644624000-1644710399@www.cdlsusa.org
SUMMARY:Lights of Love for our CdLS Angels
DESCRIPTION:February 12th is CdLS Remembrance Day\, we ask everyone\, everywhere\, to light a candle in remembrance of each and every one of our loved ones who are no longer with us. \nSadly\, more of individuals with CdLS have gained their wings in the past year\, and we want to use this worldwide event to recognize and honor them.
URL:https://www.cdlsusa.org/event/lights-of-love-for-our-cdls-angels-2/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2021/02/Lights-of-Love.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220228
DTEND;VALUE=DATE:20220301
DTSTAMP:20260403T150258
CREATED:20210826T014952Z
LAST-MODIFIED:20210826T015305Z
UID:5775-1646006400-1646092799@www.cdlsusa.org
SUMMARY:Rare Disease Day
DESCRIPTION:Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. \nFor more information\, contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/rare-disease-day-2/
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END:VEVENT
END:VCALENDAR