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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220811T120000
DTEND;TZID=America/New_York:20220811T120000
DTSTAMP:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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:20260403T193628
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
BEGIN:VEVENT
DTSTART;TZID=UTC:20230321T200000
DTEND;TZID=UTC:20230321T210000
DTSTAMP:20260403T193628
CREATED:20230127T013631Z
LAST-MODIFIED:20230207T195534Z
UID:6907-1679428800-1679432400@www.cdlsusa.org
SUMMARY:Grieving in Relation to Others
DESCRIPTION:Grief whether anticipatory or in bereavement is a shared experience for the family and yet each member will likely experience and process grief in different ways\, over different periods of time and with varied physical and emotional manifestations. Parents often wonder or worry will I have the capacity to support my other children in their grief as I navigate my own? Or will my marriage or partner relationship change or suffer if we grieve in different ways? Others may struggle with extended family members whose response to the loss differs from their own. Friends and co-workers initially understanding and supportive in the early days often seem to lose patience as time passes. Keeping relationships healthy and strong is hard work\, especially in bereavement.\n\nThis session will explore:\n\n– The experience of grief in relation to how others receive it\n– Grieving in partnership with a spouse or partner and extended family members\n– Ways to understand and support the surviving siblings\n– Grief and work life\n– Inviting others to hold space with you\n\nThis webinar will be held from 8 – 9 pm EST.\n\nRegister Now
URL:https://www.cdlsusa.org/event/grieving-in-relation-to-others/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/01/Grieving-in-Relation-to-Others.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230325
DTEND;VALUE=DATE:20230326
DTSTAMP:20260403T193628
CREATED:20230209T235215Z
LAST-MODIFIED:20230223T215813Z
UID:6954-1679702400-1679788799@www.cdlsusa.org
SUMMARY:California Family Gathering
DESCRIPTION:Join families from California for a CdLS Foundation Sponsored Family Gathering. \nGraciously hosted by\nTraci Weber and Kimberly Ingold \nSaturday\, March 25\, 2023\n11–3 PM PST\nHarvard Community Center\n14701 Harvard Ave\nIrvine\, CA 92606 \nFor more information\, contact: familyserviceteam@cdlsusa.org \nRegister Today
URL:https://www.cdlsusa.org/event/california-family-gathering/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/02/Family-gathering-Instagram.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230401
DTEND;VALUE=DATE:20230402
DTSTAMP:20260403T193628
CREATED:20220811T232350Z
LAST-MODIFIED:20220811T232350Z
UID:6576-1680307200-1680393599@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-9/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230411T130000
DTEND;TZID=UTC:20230411T143000
DTSTAMP:20260403T193628
CREATED:20230209T200205Z
LAST-MODIFIED:20230209T211552Z
UID:6950-1681218000-1681223400@www.cdlsusa.org
SUMMARY:CdLS Foundation Webinar Series: Navigating the Health Care System
DESCRIPTION:So much of our ability to access medical and behavioral health care in the U.S. depends on a family’s health insurance. Whether your health coverage is offered by your employer\, purchased on a health exchange\, or includes Medicaid or Medicare\, understanding health insurance is a challenge for just about everyone. \nMaking sure you make the best selection possible for your family\, understand your benefits\, and how to get the most from your health plan is even more important when someone has complex care needs. Join us for this interactive webinar to  better understand \n\nThe different kinds of health plans offered by employers or through the marketplace and how they may best meet your family’s needs\n What frequently used insurance terms mean.\nWho to ask for and how to get accurate information from your health plan\nHow to advocate within your health plan\, including the denial and appeal process\nWhat is Medicaid\, how can it help\, and how to learn to apply for Medicaid\nHow long can my child remain on a parent’s insurance?\n\nThe webinar will be interactive\, allowing for questions and conversation\, so spaces are limited. Register now to attend!
URL:https://www.cdlsusa.org/event/cdls-foundation-webinar-series-navigating-the-health-care-system/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/02/2023-Instagram-and-LinkedIn-Navigating-the-Health-Care-System.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230412T200000
DTEND;TZID=UTC:20230412T210000
DTSTAMP:20260403T193628
CREATED:20230127T013825Z
LAST-MODIFIED:20230207T195254Z
UID:6908-1681329600-1681333200@www.cdlsusa.org
SUMMARY:Understanding and Addressing Pediatric Medical Trauma
DESCRIPTION:Anyone\, from infancy through adulthood\, can experience medical trauma. Caregivers can too. Understanding what medical trauma is and knowing the signs can help you get support for your child and family. Dr. Meghan Marsac\, pediatric psychologist\, and pediatric medical trauma expert\, and Melissa Hogan\, mother of a child with a rare disease\, wrote the book “Afraid of the Doctor” to help families who experience stressful and potentially traumatic medical events. Join us in conversation with them to learn more about this important topic.\n\nThis webinar will be held from 8 – 9 pm EST.\n\nRegister Now
URL:https://www.cdlsusa.org/event/understanding-and-addressing-pediatric-medical-trauma/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/01/Understanding-and-Addressing-Pediatric-Medical-Trauma.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230513
DTEND;VALUE=DATE:20230514
DTSTAMP:20260403T193628
CREATED:20221017T185451Z
LAST-MODIFIED:20230303T020724Z
UID:6673-1683936000-1684022399@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-2/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/06/2014.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230519T150000
DTEND;TZID=UTC:20230519T160000
DTSTAMP:20260403T193628
CREATED:20230413T223847Z
LAST-MODIFIED:20230413T223847Z
UID:7089-1684508400-1684512000@www.cdlsusa.org
SUMMARY:CdLS Foundation Webinar Series: Speech\, Language\, and AAC Devices
DESCRIPTION:
URL:https://www.cdlsusa.org/event/cdls-foundation-webinar-series-speech-language-and-aac-devices/
LOCATION:Zoom Webinar
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/04/Speech-Language-and-AAC-Devices-Event.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230522
DTEND;VALUE=DATE:20230523
DTSTAMP:20260403T193628
CREATED:20221212T224428Z
LAST-MODIFIED:20230209T013850Z
UID:6809-1684713600-1684799999@www.cdlsusa.org
SUMMARY:2023 New England Golf Classic
DESCRIPTION:Plans are underway for a fantastic golf fundraiser at Ipswich Country Club for the 30th Annual New England Golf Classic to be held on Monday\, MAY 22\, 2023! This popular event will be played in spring. So be sure to make this your first golf outing of the year\, and be ready for a great day of golf and camaraderie! \nLearn more
URL:https://www.cdlsusa.org/event/2023-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
ORGANIZER;CN="Sherry Waitsman":MAILTO:swaitsman@CdLSusa.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230625T140000
DTEND;TZID=UTC:20230625T170000
DTSTAMP:20260403T193628
CREATED:20230329T184404Z
LAST-MODIFIED:20230424T210725Z
UID:7055-1687701600-1687712400@www.cdlsusa.org
SUMMARY:Illinois Family Gathering
DESCRIPTION:Join families from Illinois for a CdLS Foundation Sponsored Family Gathering. Graciously hosted by Charyn Beaumont\, June 25\, 2023 2-5pm PM CST at the Burning Bush Community Center in Mount Prospect\, IL. \nFor more information\, contact: familyserviceteam@cdlsusa.org. \nRegister here
URL:https://www.cdlsusa.org/event/illinois-family-gathering-2/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2022/09/Family-gathering-header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230805T103000
DTEND;TZID=UTC:20230805T123000
DTSTAMP:20260403T193628
CREATED:20230720T172201Z
LAST-MODIFIED:20230720T172201Z
UID:7244-1691231400-1691238600@www.cdlsusa.org
SUMMARY:Kansas Family Gathering
DESCRIPTION:Join us for a CdLS Family GatheringSaturday August 5\, 202310:30 – 12:30Christ Community Church20600 W 119th StreetOlathe\, KS 66061Hosted by Ashley and Matt Franck\, parents to Sage. RSVP mattandashley28@gmail.comA light lunch will be provided
URL:https://www.cdlsusa.org/event/kansas-family-gathering/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2022/09/Family-gathering-header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230921T120000
DTEND;TZID=UTC:20230921T130000
DTSTAMP:20260403T193628
CREATED:20230829T233020Z
LAST-MODIFIED:20230829T233020Z
UID:7309-1695297600-1695301200@www.cdlsusa.org
SUMMARY:2023 Parent University™ Class 9: Don’t Stress Out: Finding Professionals to Help
DESCRIPTION:Protected Tomorrows’ 2023 Parent University™ brings you our ninth in a series of educational webinars…\n\n“Don’t Stress Out: Finding Professionals to Help”\n\nOur guest speakers will talk about the stress we often face as caregivers (or as the person with the disability); maybe we can’t avoid it\, but we certainly should be able to find professionals who can guide us to survive it. What everyday techniques can we learn\, and if we need professional assistance from a medical professional\, can we find someone who really understands what we are going through?\n\nRegister here
URL:https://www.cdlsusa.org/event/2023-parent-university-class-9-dont-stress-out-finding-professionals-to-help/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230923T140000
DTEND;TZID=UTC:20230923T170000
DTSTAMP:20260403T193628
CREATED:20230818T212134Z
LAST-MODIFIED:20230823T162735Z
UID:7294-1695477600-1695488400@www.cdlsusa.org
SUMMARY:Aubrie's Army Fundraiser for the CdLS Foundation
DESCRIPTION:Please join Aubrie’s Army for an afternoon fundraiser to raise awareness and funds for CdLS.\n\nActivities include a silent auction\, a 1-mile fun run or walk option\, light refreshments\, and raffle prices.\n\nBid winners will be announced at 4:30 PM.\n\nFun Run tickets are $25 per person. The fun run event starts at 3 PM\, and participants receive a shirt and gift bag.\n\nALL PROCEEDS WILL GO DIRECTLY TO THE CdLS FOUNDATION.\n\n\nHannah Park\n6547 Clark State Road\nGahanna\, OH 43230\n\n\nIf you are unable to attend and would still like to donate\, visit: https://bit.ly/AubriesArmy
URL:https://www.cdlsusa.org/event/aubries-army-fundraiser-for-the-cdls-foundation/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231004T183000
DTEND;TZID=UTC:20231004T203000
DTSTAMP:20260403T193628
CREATED:20230829T233437Z
LAST-MODIFIED:20230829T233437Z
UID:7310-1696444200-1696451400@www.cdlsusa.org
SUMMARY:Planning For The Future
DESCRIPTION:Sponsored by: Willow Creek Church\, South Barrington\nSpeaker: Mary Anne Ehlert\, President & Founder\, Protected Tomorrows\, Inc.\n\nCome join us at Willow Creek Church for Mary Anne Ehlert’s presentation: “Planning For The Future.”\n\nThis presentation will be uplifting\, interactive and educational\, as well as provide a good basic understanding of some of the important facts. Participants will develop the foundation for their family’s own personal Future Care Plan™. Some topics of discussion include How to create a map of the future\, preparing legally and financially\, and maximizing government benefits. Also covered will be the ABLE Act; transition; guardianship; Special Needs Trusts\, future residential support and building a lifelong support network.\n\n\nWillow Creek Community Church\n67 Algonquin Road\nSouth Barrington\, IL 60010\n\n\nStay Tuned for the Link to Register!\n\n\nPlease contact Brenda at bkuntz@willowcreek.org with any questions.
URL:https://www.cdlsusa.org/event/planning-for-the-future/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
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END:VCALENDAR