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X-ORIGINAL-URL:https://www.cdlsusa.org
X-WR-CALDESC:Events for CdLS Foundation
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DTSTART:20220101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20230315T200000
DTEND;TZID=UTC:20230315T210000
DTSTAMP:20260403T184417
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:20260403T184417
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:20260403T184417
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:20260403T184417
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:20260403T184417
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:20260403T184417
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:20260403T184417
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:20260403T184417
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:20260403T184417
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:20260403T184417
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:20260403T184417
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:20260403T184417
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:20260403T184417
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:20260403T184417
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
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231007T113000
DTEND;TZID=UTC:20231007T143000
DTSTAMP:20260403T184417
CREATED:20230818T212533Z
LAST-MODIFIED:20230818T212533Z
UID:7296-1696678200-1696689000@www.cdlsusa.org
SUMMARY:Wisconsin Family Gathering
DESCRIPTION:Cornerstore Baptist Church\n11:30am- 2:30pm.\nS3111 Ableman Road Reedsburg\, WI 53959\nHosted by Brandi and Chamuel Marvici\, parents of Reagan.
URL:https://www.cdlsusa.org/event/wisconsin-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;VALUE=DATE:20231008
DTEND;VALUE=DATE:20231009
DTSTAMP:20260403T184417
CREATED:20221110T205501Z
LAST-MODIFIED:20230208T222906Z
UID:6720-1696723200-1696809599@www.cdlsusa.org
SUMMARY:2023 Bank of America Chicago Marathon
DESCRIPTION:The CdLS Foundation will once again have a fantastic Team CdLS running in Chicago! The 2023 Bank of America Chicago Marathon has been officially scheduled for October 8. Team CdLS will converge on Chicago this Fall\, and to run for our precious children and adults with CdLS and their families.\n\nTeam CdLS – Chicago is in the process of building our team of runners for the big event. Spots are going fast. Register today. If you are not a runner\, but want to get involved\, contact Sherry Waitsman for ideas.
URL:https://www.cdlsusa.org/event/2023-bank-of-america-chicago-marathon/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/Team-CdLS-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231009
DTEND;VALUE=DATE:20231010
DTSTAMP:20260403T184417
CREATED:20221212T224114Z
LAST-MODIFIED:20230201T012214Z
UID:6807-1696809600-1696895999@www.cdlsusa.org
SUMMARY:2023 MCWP & PLM Amber Gaines Memorial Golf Classic
DESCRIPTION:The CdLS Foundation’s longest running major event – the MCWP & PLM Amber Gaines Memorial Golf Classic – is kicking off its 35th year on Monday\, October 9\, 2023\, at the beautiful Tapawingo National Golf Course in St. Louis\, MO. Registration and lunch begin at 11 AM with a 12:30 PM shotgun start\, followed by cocktails\, dinner\, and prizes at 5:30 PM. Don’t miss the best golf event in the Midwest!
URL:https://www.cdlsusa.org/event/amber-gaines-memorial-golf-classic-2/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/06/mo-golf.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231012T120000
DTEND;TZID=UTC:20231012T130000
DTSTAMP:20260403T184417
CREATED:20230829T233707Z
LAST-MODIFIED:20230829T233707Z
UID:7311-1697112000-1697115600@www.cdlsusa.org
SUMMARY:2023 Parent University™ Class 10: Financial Planning for the Whole Family: Now and In the Future
DESCRIPTION:Sponsored by: Protected Tomorrows’ 2023 Parent University™\nSpeaker: Mary Anne Ehlert\, President & Founder\, Protected Tomorrows\, Inc.\n\nDescription:\n\nProtected Tomorrows’ 2023 Parent University™ brings you our tenth in a series of educational webinars…\n\n“Financial Planning for the Whole Family: Now and In the Future”\n\nOur financial planning needs to be different. We have to take care of ourselves\, our whole family\, sometimes our extended family\, and we have to do it during our working years\, our retired years\, and even beyond our lifetime. We need to know how to fit all of this into our planning – think about social security differently\, build our portfolio differently\, and thoroughly understand the insurance we need or don’t need. The whole planning process can be overwhelming\, but one step at a time makes it much easier to make progress.\n\nMary Anne Ehlert will host this online Zoom class on:\nOctober 12th\, 2023\n12:00pm – 1:00 pm CDT\n\nRegister here.
URL:https://www.cdlsusa.org/event/2023-parent-university-class-10-financial-planning-for-the-whole-family-now-and-in-the-future/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231014
DTEND;VALUE=DATE:20231015
DTSTAMP:20260403T184417
CREATED:20221110T213320Z
LAST-MODIFIED:20230208T222811Z
UID:6724-1697241600-1697327999@www.cdlsusa.org
SUMMARY:2023 Baltimore Running Festival
DESCRIPTION:Join Team CdLS – Baltimore for 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).Team CdLS – Baltimore is in the process of building our team of runners for the big event. Spots are going fast. Register today. If you are not a runner\, but want to get involved\, contact Sherry Waitsman for ideas.
URL:https://www.cdlsusa.org/event/2023-baltimore-running-festival/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2022/11/Team-Baltimore.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231014T100000
DTEND;TZID=UTC:20231014T140000
DTSTAMP:20260403T184417
CREATED:20230608T005536Z
LAST-MODIFIED:20230725T222037Z
UID:7165-1697277600-1697292000@www.cdlsusa.org
SUMMARY:Texas Family Gathering
DESCRIPTION:Windhaven Meadows Park – Pavilion\n10 a.m. – 2 p.m. CDT\n5400 Windhaven ParkwayPlano\, TX 75093\n\nHosted by Tiffany Hendricks\, mom to Tristen and Olivia; Bailey Woods\, mom to Carson.
URL:https://www.cdlsusa.org/event/texas-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:20231015T000000
DTEND;TZID=UTC:20231015T000000
DTSTAMP:20260403T184417
CREATED:20230929T212256Z
LAST-MODIFIED:20230929T212256Z
UID:7381-1697328000-1697328000@www.cdlsusa.org
SUMMARY:2023 Walk for Will and Hope
DESCRIPTION:Join us for the 2023 Walk for Will & Hope on Sunday\, October 15\, at Stony Creek Metropark in Shelby Township.\nWe’ll walk two miles to raise funds for the CdLS Foundation. The walk is named after Will and Hope Kurth\, who were both born with Cornelia de Lange Syndrome (CdLS)\, a rare genetic condition that affects growth\, development\, and other areas.\nBased in Connecticut\, the CdLS Foundation is a nonprofit that helps those affected by CdLS and their families. It holds a conference every other year\, brings medical professionals familiar with the syndrome together\, and connects researchers. It’s an invaluable resource for families like the Kurths.\nOn October 15\, we’ll have the usual cider\, donuts\, and coffee. We’ll meet at the Mount Vernon picnic shelter. This is a non-timed event.\nJoin us!\nCan’t make it but want to support the Walk? Donate today by visiting bit.ly/WalkforWandH
URL:https://www.cdlsusa.org/event/2023-walk-for-will-and-hope/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/09/FaceBook-Event-Covers-1920-x-1080.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231022T120000
DTEND;TZID=UTC:20231022T170000
DTSTAMP:20260403T184417
CREATED:20230818T212353Z
LAST-MODIFIED:20230818T212353Z
UID:7295-1697976000-1697994000@www.cdlsusa.org
SUMMARY:Iowa Family Gathering
DESCRIPTION:Cutty’s Okoboji Resort Club\n12pm – 5pm.\n1528 Highway 86 Spirit Lake\, IA 51360\nHosted by Kate Shaw\, sister to Kimberly.
URL:https://www.cdlsusa.org/event/iowa-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:20231104
DTEND;VALUE=DATE:20231105
DTSTAMP:20260403T184417
CREATED:20220812T001946Z
LAST-MODIFIED:20220812T001946Z
UID:6578-1699056000-1699142399@www.cdlsusa.org
SUMMARY:Multidisciplinary Clinic for Adolescents and Adults
DESCRIPTION:This Foundation-managed\, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore\, MD. Foundation Medical Director Antonie Kline\, M.D.\, Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC\, has led these clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. \nPresentations on the following topics from CdLS Clinical Advisory Board members: Behavioral Psychology\, Child Psychiatry\, Gastroenterology\, Genetics\, Gynecology\, Neurology\, Pediatric Ophthalmology\, Speech Pathology. Live Q&A with CdLS Clinical Advisory Board Members. \nFor more information on the clinic or to secure your spot\, contact Whitney Rinaldi or call 860.676.8166.
URL:https://www.cdlsusa.org/event/multidisciplinary-clinic-for-adolescents-and-adults-10/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231116T120000
DTEND;TZID=UTC:20231116T130000
DTSTAMP:20260403T184417
CREATED:20230829T233926Z
LAST-MODIFIED:20230829T233926Z
UID:7312-1700136000-1700139600@www.cdlsusa.org
SUMMARY:2023 Parent University™ Class 11: The Big Worry; Future Residential Options
DESCRIPTION:Sponsored by: Protected Tomorrows’ 2023 Parent University™\nSpeaker: Mary Anne Ehlert\, President & Founder\, Protected Tomorrows\, Inc.\n\nDescription:\n\nProtected Tomorrows’ 2023 Parent University™ brings you our eleventh in a series of educational webinars…\n\n“The Big Worry; Future Residential Options”\n\nWe often hear this is the biggest worry. Where\, when\, how much it will cost\, and most importantly\, who will provide the oversight. Our panel will give us insights as to the steps to take\, how to think about starting\, is it ever too early or too late\, and finally how to involve the whole family and the Dream team in this process. There are many\, many types\, we’ll develop a tool together to identify what is the starting point of identifying the most important things you need to look for in your own situation.\n\nMary Anne Ehlert will host this online Zoom class on:\nNovember 16th\, 2023\n12:00pm – 1:00 pm CST\n\nRegister here.
URL:https://www.cdlsusa.org/event/2023-parent-university-class-11-the-big-worry-future-residential-options/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231128
DTEND;VALUE=DATE:20231129
DTSTAMP:20260403T184417
CREATED:20230215T211818Z
LAST-MODIFIED:20230215T215631Z
UID:6974-1701129600-1701215999@www.cdlsusa.org
SUMMARY:Giving Tuesday
DESCRIPTION:Mark your calendars to create your social media outreach.
URL:https://www.cdlsusa.org/event/giving-tuesday/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/02/GT-LOGO.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20231207T120000
DTEND;TZID=UTC:20231207T130000
DTSTAMP:20260403T184417
CREATED:20230829T234147Z
LAST-MODIFIED:20230829T234147Z
UID:7313-1701950400-1701954000@www.cdlsusa.org
SUMMARY:2023 Parent University™ Class 12: Wrap Up: Did you Get Real?
DESCRIPTION:Sponsored by: Protected Tomorrows’ 2023 Parent University™\nSpeaker: Mary Anne Ehlert\, President & Founder\, Protected Tomorrows\, Inc.\n\nDescription:\n\nProtected Tomorrows’ 2023 Parent University™ brings you our twelfth and final in a series of educational webinars…\n\n“Wrap Up: Did you Get Real?”\n\nWe started with wanting to be real and created a list of goals in January. How did you do? What did you accomplish\, and what are the stumbling blocks? We’ll focus on successes and recognize where you started and how far you have come. It’s time to pat yourself on the back\, and graduate from Protect Tomorrows Parent University 2023. If you identified roadblocks\, how do you get help? We’ll set very specific goals to carry forward into 2024.\n\nMary Anne Ehlert will host this online Zoom class on:\nDecember 7th\, 2023\n12:00pm – 1:00 pm CST\n\nRegister here.
URL:https://www.cdlsusa.org/event/2023-parent-university-class-12-wrap-up-did-you-get-real/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240212
DTEND;VALUE=DATE:20240213
DTSTAMP:20260403T184417
CREATED:20230829T231819Z
LAST-MODIFIED:20230829T231819Z
UID:7306-1707696000-1707782399@www.cdlsusa.org
SUMMARY:A Day of Remembrance
DESCRIPTION:Losing a loved one with CdLS at any age can be life-altering. Parents\, siblings\, relatives\, and friends feel a tremendous loss and often have difficulty understanding why. It is so important that we as a community surround them with support and unconditional love. Although they have lost their child\, grandchild\, or sibling – they still belong and will forever be part of our journey.\n\nOn February 12\, we will be celebrating CdLS Remembrance Day. We ask that our fellow CdLS community members partake in this special day with us to show solidarity with families who no longer have loved ones with them.\n\nPlease take a moment to remember everyone with CdLS who has died over the years.\n\nFor more information\, contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/a-day-of-remembrance-3/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2021/02/CdLS-Angels-Day-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240215T130000
DTEND;TZID=UTC:20240215T140000
DTSTAMP:20260403T184417
CREATED:20240131T021629Z
LAST-MODIFIED:20240131T021752Z
UID:7553-1708002000-1708005600@www.cdlsusa.org
SUMMARY:Parent University: BACK TO BASICS AND WHAT’S NEW
DESCRIPTION:This is for our new participants as well as those who have been with us before. We will review the basics and hear about what’s new. What do you have to pay attention to and how will it change your plan? Government Benefits\, Special Needs Trusts\, ABLE accounts\, Secure Act 2.0\, Tax Changes and more.\n\nRegister Here
URL:https://www.cdlsusa.org/event/parent-university-back-to-basics-and-whats-new/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20240229T190000
DTEND;TZID=UTC:20240229T203000
DTSTAMP:20260403T184417
CREATED:20240131T014039Z
LAST-MODIFIED:20240131T025924Z
UID:7552-1709233200-1709238600@www.cdlsusa.org
SUMMARY:Rare Disease Day Viewing Party: UNSEEN
DESCRIPTION:Join families\, board members\, and staff members on Rare Disease Day\, February 29\, 2024\, for a viewing party.\n\nMany caregivers for children or adults who are disabled or medically complex are exhausted and isolated. The award-winning “UNSEEN” documentary gives an honest glimpse into caregivers’ lives to enable change for millions.\n\nTo watch the preview of UNSEEN click here.\n\nRegister here!
URL:https://www.cdlsusa.org/event/rare-disease-day-viewing-party-unseen/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2024/01/Unseen.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240313
DTEND;VALUE=DATE:20240314
DTSTAMP:20260403T184417
CREATED:20230829T231002Z
LAST-MODIFIED:20230829T231525Z
UID:7304-1710288000-1710374399@www.cdlsusa.org
SUMMARY:Multi-Specialty Clinic for Children with CdLS
DESCRIPTION:We are excited to share that there will be a clinic on March 13\, 2024 at Shriners Children’s Salt Lake City. The clinic is a wonderful opportunity to meet with mulitiple doctors with expertise in CdLS all in one day.
URL:https://www.cdlsusa.org/event/multi-specialty-clinic-for-children-with-cdls/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/02/ShrinersChildrensLogo.png
END:VEVENT
END:VCALENDAR