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X-WR-CALDESC:Events for CdLS Foundation
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DTSTART;VALUE=DATE:20220212
DTEND;VALUE=DATE:20220213
DTSTAMP:20260403T195059
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:20260403T195059
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:20260403T195059
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/08/1200px-Rare_Disease_Day.svg_.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220319T120000
DTEND;TZID=UTC:20220319T120000
DTSTAMP:20260403T195059
CREATED:20220217T222349Z
LAST-MODIFIED:20220217T222349Z
UID:6236-1647691200-1647691200@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University: Siblings & Caregivers: What They Might Want to Ask & What We Need to Tell Them
DESCRIPTION:In this class\, we will discuss how to prepare siblings and future caregivers so that they feel comfortable taking over the role. Let’s bring up the tough topics. We as parents want confidence that our plan will work as Future Caregivers who will take on this very important role. The hard questions will be addressed. We will get the advice from those who have stepped into the role to give us their input as well.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-siblings-caregivers-what-they-might-want-to-ask-what-we-need-to-tell-them/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220324T130000
DTEND;TZID=America/New_York:20220324T130000
DTSTAMP:20260403T195059
CREATED:20220217T222009Z
LAST-MODIFIED:20220217T222009Z
UID:6234-1648126800-1648126800@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University: – Finance\, Taxes\, & Special Needs – Making It All Work in The End
DESCRIPTION:We understand that often we as parents put our children first. It’s natural. But we need to make sure we are financially secure as well\, because without us\, our children just might not be ok. We will talk about how your financial planning needs to be different\, how to coordinate the Special Needs Trust and the ABLE Account into it\, and how you integrate tax planning into your overall plan. There are so many taxes to consider\, including income taxes\, estate taxes and more. Questions such as\, “If I am charging my child rent\, do I claim it on my taxes?” will be answered. And we will talk about how the SECURE ACT might change how I distribute my retirement accounts to my children.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-finance-taxes-special-needs-making-it-all-work-in-the-end/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220402
DTEND;VALUE=DATE:20220403
DTSTAMP:20260403T195059
CREATED:20210614T191044Z
LAST-MODIFIED:20210614T191044Z
UID:3914-1648857600-1648943999@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 Deirdre Summa or call 860.676.8166.
URL:https://www.cdlsusa.org/event/multidisciplinary-clinic-for-adolescents-and-adults-8/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220421T120000
DTEND;TZID=UTC:20220421T120000
DTSTAMP:20260403T195059
CREATED:20220217T222150Z
LAST-MODIFIED:20220217T222150Z
UID:6235-1650542400-1650542400@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University: – Benefits: What You Need to Know & Get Clarity about the Often-Asked Questions
DESCRIPTION:We will discuss SSI\, SSDI\, DAC\, Medicare\, and Medicaid. We will talk about confusing topics like A.) Charging your child rent versus using the fair share formula. B.) Why do I hear you always get turned down the first time you apply for SSI? Is it true? C.) Do we really need to plan differently as to how we as parents plan to take our own Social Security?
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-benefits-what-you-need-to-know-get-clarity-about-the-often-asked-questions/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220514
DTEND;VALUE=DATE:20220515
DTSTAMP:20260403T195059
CREATED:20210826T014715Z
LAST-MODIFIED:20210826T014715Z
UID:5774-1652486400-1652572799@www.cdlsusa.org
SUMMARY:National 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/national-cdls-awareness-day/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/06/2014.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220519T120000
DTEND;TZID=America/New_York:20220519T120000
DTSTAMP:20260403T195059
CREATED:20220218T000238Z
LAST-MODIFIED:20220218T000238Z
UID:6237-1652961600-1652961600@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University - Siblings & Caregivers: What They Might Want to Ask & What We Need to Tell Them
DESCRIPTION:In this class\, we will discuss how to prepare siblings and future caregivers so that they feel comfortable taking over the role. Let’s bring up the tough topics. We as parents want confidence that our plan will work as Future Caregivers who will take on this very important role. The hard questions will be addressed. We will get the advice from those who have stepped into the role to give us their input as well.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-siblings-caregivers-what-they-might-want-to-ask-what-we-need-to-tell-them-2/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220523
DTEND;VALUE=DATE:20220524
DTSTAMP:20260403T195059
CREATED:20211210T212052Z
LAST-MODIFIED:20220329T201542Z
UID:6098-1653264000-1653350399@www.cdlsusa.org
SUMMARY:2022 New England Golf Classic
DESCRIPTION:Plans are underway for a fantastic golf fundraiser at Ipswich Country Club for the 29th Annual New England Golf Classic to be held on Monday\, MAY 23\, 2022! That’s right this popular event has been moved back to it’s original season and 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 camraderie! \nLearn more
URL:https://www.cdlsusa.org/event/2022-new-england-golf-classic/
LOCATION:Ipswich Country Club\, 148 Country Club Way\, Ipswich\, MA\, 01938\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2021/06/Christie-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220611
DTEND;VALUE=DATE:20220612
DTSTAMP:20260403T195059
CREATED:20211210T212929Z
LAST-MODIFIED:20211210T212929Z
UID:6100-1654905600-1654991999@www.cdlsusa.org
SUMMARY:2nd Annual Hit the Trails in Avon\, CT
DESCRIPTION:Find out how to start your peer-to-peer fundraising and join CdLS Foundation families\, staff and volunteers as we walk\, run or bike an easy stint along one of the scenic Rail Trails in New England on the Farmington Valley Greenway Trail. Events@cdlsusa.org
URL:https://www.cdlsusa.org/event/2nd-annual-hit-the-trails-in-avon-ct/
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=America/New_York:20220616T120000
DTEND;TZID=America/New_York:20220616T120000
DTSTAMP:20260403T195059
CREATED:20220218T000458Z
LAST-MODIFIED:20220218T000458Z
UID:6238-1655380800-1655380800@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University – How to Make Life Better: Vacations Tips & Service Dogs
DESCRIPTION:In this class\, we will talk about taking vacations with your special needs child. How to plan better. Ideas so the whole family can have fun! How do we plan to make sure this continues by adding the recreation into our planning? And what about Service Dogs; Can they bring happiness and comfort to your child’s life?
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-how-to-make-life-better-vacations-tips-service-dogs/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220721T120000
DTEND;TZID=America/New_York:20220721T120000
DTSTAMP:20260403T195059
CREATED:20220218T001814Z
LAST-MODIFIED:20220218T001814Z
UID:6239-1658404800-1658404800@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University – Your Dream Team… Who Needs To Be There When You Can Not
DESCRIPTION:We will discuss what your Child’s Dream Team should consist of\, such as your legal team\, your financial team\, medical support\, recreation coordinators and the Coaches (the caregivers and guardians)\, How do you put a PLAYBOOK together with all the instructions your Team needs? What questions should you be asking your Dream Team now? How do you know if they are the right people for the Team? Tips and Ideas will be discussed. How will you keep them informed going forward?
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-your-dream-team-who-needs-to-be-there-when-you-can-not/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220811T120000
DTEND;TZID=America/New_York:20220811T120000
DTSTAMP:20260403T195059
CREATED:20220218T002145Z
LAST-MODIFIED:20220218T002145Z
UID:6240-1660219200-1660219200@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University – What are the Alternatives Best Suited for Your Child’s Success After They Leave Transition Programs?
DESCRIPTION:Why is transitioning each child so different? In this class\, we will discuss what happens when the bus stops coming. We will talk about day programming\, special recreation services\, job counseling\, job coaching\, and turning your child’s interest into a business opportunity.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-what-are-the-alternatives-best-suited-for-your-childs-success-after-they-leave-transition-programs/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220811T120000
DTEND;TZID=America/New_York:20220811T120000
DTSTAMP:20260403T195059
CREATED:20220218T002345Z
LAST-MODIFIED:20220218T002345Z
UID:6241-1660219200-1660219200@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University – What are the Alternatives Best Suited for Your Child’s Success After They Leave Transition Programs?
DESCRIPTION:Why is transitioning each child so different? In this class\, we will discuss what happens when the bus stops coming. We will talk about day programming\, special recreation services\, job counseling\, job coaching\, and turning your child’s interest into a business opportunity.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-what-are-the-alternatives-best-suited-for-your-childs-success-after-they-leave-transition-programs-2/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220922T120000
DTEND;TZID=UTC:20220922T120000
DTSTAMP:20260403T195059
CREATED:20220218T004753Z
LAST-MODIFIED:20220218T004753Z
UID:6242-1663848000-1663848000@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University – What Are the Options\, What Is the Best Fit\, & How to Fund Them
DESCRIPTION:In this class\, we will explain in detail\, current residential options: living with your parents\, Section 8 housing\, CILAS\, group/supportive housing\, skilled nursing facilities\, and Special Needs Trust ownerships/paying rent. We will talk about determining the best fit for your child and how to fund the different options.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-what-are-the-options-what-is-the-best-fit-how-to-fund-them/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221009
DTEND;VALUE=DATE:20221010
DTSTAMP:20260403T195059
CREATED:20211116T210504Z
LAST-MODIFIED:20221003T175258Z
UID:6016-1665273600-1665359999@www.cdlsusa.org
SUMMARY:2022 Bank of America Chicago Marathon
DESCRIPTION:Many runners say that running has changed their lives. Team CdLS runners say that they have changed the lives of others. Join the Cornelia de Lange Syndrome (CdLS) Foundation at the world-renowned Bank of America Chicago Marathon Sunday\, October 9\, 2022\, AND Agree to collect a minimum of no less than $1\,250 (USD) if the entry is claimed during the application window (Tuesday\, October 19\, 2021 to Tuesday\, November 30\, 2021 at 2 pm) and $1\,750 (USD) if the entry is claimed following the application window (after 2pm Tuesday\, November 30\, 2021 to Wednesday\, September 14\, 2022). \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. \nContact: specialevents@CdLSusa.org or call 800.753.2357 \nHelp support the team\, Donate Now.
URL:https://www.cdlsusa.org/event/chicago-marathon/
LOCATION:Chicago\, IL
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/11/20191013_063902-scaled.jpg
ORGANIZER;CN="Sherry Waitsman":MAILTO:swaitsman@CdLSusa.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221010
DTEND;VALUE=DATE:20221011
DTSTAMP:20260403T195059
CREATED:20211210T212458Z
LAST-MODIFIED:20211210T212458Z
UID:6099-1665360000-1665446399@www.cdlsusa.org
SUMMARY:Amber Gaines Memorial Golf Classic
DESCRIPTION:2022 Amber Gaines Memorial Golf Classic – Monday\, October 10 This long standing Missouri golf outing is one of the CdLS Foundation’s largest fundraisers. MCWP & PLM’s 33rd Annual Amber Gaines Memorial Golf Classic is slated for Monday\, October 10th at the Tapawingo National Golf Club. Participants will enjoy 18 holes of golf\, brunch\, dinner\, and an opportunity to win both skill and door prizes.
URL:https://www.cdlsusa.org/event/amber-gaines-memorial-golf-classic/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2021/06/IMG_3422-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221015
DTEND;VALUE=DATE:20221016
DTSTAMP:20260403T195059
CREATED:20211210T032106Z
LAST-MODIFIED:20221003T175113Z
UID:6094-1665792000-1665878399@www.cdlsusa.org
SUMMARY:2022 Baltimore Running Festival
DESCRIPTION:Join Team CdLS runners at the Baltimore Running Festival on Saturday\, October 15\, 2022. Here is a chance to run through the scenic Inner Harbor waterfront area\, historic Federal Hill and charming Fells Point; all to raise money for children and adults with Cornelia de Lange Syndrome (CdLS). \nNot sure you can handle the full 26.2 mile marathon? That’s okay! There are different distances for a variety of skill levels. Walk the 5K\, jog the 10k\, stroll the half marathon or go for gold and take on the full marathon. The options are up to you! \nHelp support the team Donate Now
URL:https://www.cdlsusa.org/event/2022-baltimore-running-festival/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/IMG_4551.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221020T120000
DTEND;TZID=America/New_York:20221020T120000
DTSTAMP:20260403T195059
CREATED:20220218T004951Z
LAST-MODIFIED:20220218T004951Z
UID:6243-1666267200-1666267200@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University – Spooky Scenarios
DESCRIPTION:What do we hear that scares families the most. We will be tracking the toughest questions from all classes\, as well surveys done during the year. Come prepared with your questions. We are going to tackle the tough ones!
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-spooky-scenarios/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20221022T120000
DTEND;TZID=UTC:20221022T160000
DTSTAMP:20260403T195059
CREATED:20220923T194545Z
LAST-MODIFIED:20220923T194545Z
UID:6645-1666440000-1666454400@www.cdlsusa.org
SUMMARY:New England Family Gathering
DESCRIPTION:Everyone is welcome! Come and enjoy an afternoon of connecting\, learning and fun for the whole family! Enjoy pony rides by Pony Town Parties\, pumpkin decorating\, and outdoor games. Fragile Footprints\, a local family support organization\, will host fun activities and games for siblings during the event.\n\nTo learn more about this event and how to RSVP contact Deirdre Summa.
URL:https://www.cdlsusa.org/event/new-england-family-gathering/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2022/09/Family-gathering-header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221029
DTEND;VALUE=DATE:20221030
DTSTAMP:20260403T195059
CREATED:20210614T191004Z
LAST-MODIFIED:20220819T211026Z
UID:3913-1667001600-1667087999@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-7/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20221106
DTEND;VALUE=DATE:20221107
DTSTAMP:20260403T195059
CREATED:20211210T213532Z
LAST-MODIFIED:20211210T213739Z
UID:6101-1667692800-1667779199@www.cdlsusa.org
SUMMARY:2022 TCS NYC Marathon
DESCRIPTION:
URL:https://www.cdlsusa.org/event/2022-tcs-nyc-marathon/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/team-cdls-logo-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20221117T120000
DTEND;TZID=America/New_York:20221117T120000
DTSTAMP:20260403T195059
CREATED:20220218T005151Z
LAST-MODIFIED:20220218T005151Z
UID:6244-1668686400-1668686400@www.cdlsusa.org
SUMMARY:Protected Tomorrows\, Parent University – Year End Wrap Up & Q&A
DESCRIPTION:Congratulations! We have worked all year to take the 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 2023.
URL:https://www.cdlsusa.org/event/protected-tomorrows-parent-university-year-end-wrap-up-qa/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230212
DTEND;VALUE=DATE:20230213
DTSTAMP:20260403T195059
CREATED:20221017T185734Z
LAST-MODIFIED:20221017T185734Z
UID:6676-1676160000-1676246399@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. \nOn February 12\, we will be celebrating CdLS Remembrance Day. We ask that our fellow CdLS community members partake in this special day with us to show solidarity with families who no longer have loved ones with them. \nPlease take a moment to remember everyone with CdLS who has died over the years. \nFor more information\, contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/a-day-of-remembrance-2/
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:20230223T130000
DTEND;TZID=UTC:20230223T140000
DTSTAMP:20260403T195059
CREATED:20230223T000019Z
LAST-MODIFIED:20230223T000019Z
UID:6990-1677157200-1677160800@www.cdlsusa.org
SUMMARY:Parent University: Special Needs Trust: The Who's\, The What's\, and The Why's Webinar
DESCRIPTION:Join our guest speakers who will share with us the critical information you need to know about special needs trusts. Who should you consider as trustees\, what are the important questions you should be asking\, and why should you even consider setting up a trust for your family member. What kind of trust is right for your situation? How do you pick the right attorney? \nRegister Here
URL:https://www.cdlsusa.org/event/parent-university-special-needs-trust-the-whos-the-whats-and-the-whys-webinar/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260403T195059
CREATED:20221017T185607Z
LAST-MODIFIED:20221017T185607Z
UID:6674-1677542400-1677628799@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-3/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/08/1200px-Rare_Disease_Day.svg_.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230228T130000
DTEND;TZID=UTC:20230228T140000
DTSTAMP:20260403T195059
CREATED:20230209T194219Z
LAST-MODIFIED:20230209T194219Z
UID:6949-1677589200-1677592800@www.cdlsusa.org
SUMMARY:Rare Disease Day: Learn about the CdLS Health Care Notebook Webinar
DESCRIPTION:There are often challenges when you have a family member with a rare diagnosis like CdLS. All the puzzle pieces that make up your loved one’s care can seem so disjointed. Information can be hard to get\, hard to understand\, and even harder to keep organized and easy to find just when you need it most. It can feel like you are constantly recreating the wheel whenever your family member has a new provider. So you are comfortable that they understand the most important things about your family member.\n\nThe CdLS Health Care Notebook provides an easy way to keep track of and share important information with your care team.\n\nThis webinar is part of two-part series. In this webinar\, you will learn how to use the CdLS Health Care Notebook as an essential tool in coordinating and managing the needs of your family member with CdLS.\n\nThe second webinar will provide information on Navigating the Health Care System and how to become a stronger advocate with providers and your Health Plan. We hope you will join us for these webinars.\n\nRegister now
URL:https://www.cdlsusa.org/event/rare-disease-day-learn-about-the-cdls-health-care-notebook-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/02/webinar-linda.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230308
DTEND;VALUE=DATE:20230309
DTSTAMP:20260403T195059
CREATED:20230208T221723Z
LAST-MODIFIED:20230208T221723Z
UID:6941-1678233600-1678319999@www.cdlsusa.org
SUMMARY:Multidisciplinary Clinic for children at Shriners Children's Salt Lake City
DESCRIPTION:We are excited to share that there will be a Multi-Specialty Clinic for children with CdLS on March 8\, 2023\, at Shriners Children’s Salt Lake City.\n\nThe CdLS Foundation and Shriners Children’s Salt Lake City have a long-standing partnership. We are truly grateful to work together. The clinic is a wonderful opportunity to meet with multiple doctors with expertise in CdLS all in one day.\n\nDue to COVID\, we request no siblings and two adults present only. It is required that all persons entering our building be masked.\n\nIf you have any other questions or concerns\, please contact the Family Service Coordinators at familyservicesteam@cdlsusa.org or 1.800.753.2357\, press 1 for Family Service.
URL:https://www.cdlsusa.org/event/multidisciplinary-clinic-for-children-at-shriners-childrens-salt-lake-city/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/02/ShrinersChildrensLogo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230315T200000
DTEND;TZID=UTC:20230315T210000
DTSTAMP:20260403T195059
CREATED:20230127T013421Z
LAST-MODIFIED:20230207T195619Z
UID:6906-1678910400-1678914000@www.cdlsusa.org
SUMMARY:Dyadic Coping: Managing Caregiving Stress as a Couple
DESCRIPTION:All relationships face stress\, but partners caring for a child with a serious illness are confronted with unique challenges. Each person in the relationship may cope differently. You may feel closer to\, or more distance from\, your partner over time. Communication with one another about how each responds to stress and grief\, and what kind of support each person needs\, can help increase understanding. Dr. Talia Zaider\, a licensed psychologist and marriage and family therapist\, will offer insights and considerations for coping together. Hear from caregivers on how they have coped alongside their partners. There will be an opportunity to ask questions and share. \nThis webinar will be held from 8 – 9 pm EST. \nRegister Now.
URL:https://www.cdlsusa.org/event/dyadic-coping-managing-caregiving-stress-as-a-couple/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/01/Dyadic-Coping-Managing-Caregiving-Stress-as-a-Couple-Image.png
END:VEVENT
END:VCALENDAR