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DTSTART;VALUE=DATE:20260212
DTEND;VALUE=DATE:20260213
DTSTAMP:20260514T102711
CREATED:20260108T205843Z
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UID:9884-1770854400-1770940799@www.cdlsusa.org
SUMMARY:International CdLS Remembrance Day
DESCRIPTION:Losing a loved one with CdLS at any age is life-altering. Parents\, siblings\, grandparents\, relatives\, and friends experience profound grief\, often accompanied by questions that have no easy answers. During these moments\, the support of a compassionate community can make all the difference. Though their child\, sibling\, or loved one may no longer be physically with them\, these families remain an irreplaceable part of our CdLS family and our shared journey.\n\n\nOn February 12\, we will honor CdLS Remembrance Day\, a time to come together in reflection\, love\, and solidarity. We are hosting a virtual memorial event at 11:00 a.m. EST\, and we invite community members from around the world to join us as we remember\, honor\, and hold space for those we have lost.\n\n\nThe event will open with remarks from Dave Axtell\, Chairman of the CdLS World Groups and proud dad to Jade\, followed by a keynote presentation from Heather Stang\, MA\, C-IAYT\, an internationally recognized grief educator\, author\, and mindfulness practitioner.\n\n\nHeather Stang\, MA\, C-IAYT\, is an internationally recognized grief educator\, author\, and mindfulness practitioner. She is the author of Navigating Loss\, Living With Grief\, and From Grief to Peace\, and the creator of the Mindfulness and Grief System featured in The Handbook of Grief Therapies (2023). Heather hosts the Mindfulness & Grief Podcast and is the 2025 recipient of the Association for Death Education and Counseling Clinical Practice Award.\n\n Register here\n \nDownload and add the Facebook profile picture for International CdLS Remembrance Day.\n \nFor more information\, contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/international-cdls-remembrance-day-2/
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DTSTART;TZID=America/Detroit:20260212T120000
DTEND;TZID=America/Detroit:20260212T130000
DTSTAMP:20260514T102711
CREATED:20260122T204319Z
LAST-MODIFIED:20260122T204319Z
UID:9953-1770897600-1770901200@www.cdlsusa.org
SUMMARY:2026 International CdLS Remembrance Day: Continuing Your Child’s Legacy
DESCRIPTION:International and United States Gathering (English Speaking) – Continuing Your Child’s Legacy \nAfter the main Remembrance Day event\, international and United States families are warmly invited to stay with us for a special English-language gathering focused on connection\, reflection\, and emotional support at 12:00 p.m. (Eastern Time\, U.S.). \nRegister Here for the 12 p.m. event. \nThis space will be led by: Amy Graver\, Bereaved Champion at Courageous Parents Network. \nAmy Graver currently works in the corporate world and is a writer\, a wife\, and a mom of four. Her daughter Lauren was diagnosed with rhabdomyosarcoma at age 7. Amy’s writing chronicles the journey that cancer has taken her family. Lauren’s cancer diagnosis imposed a new reality and a new perspective on life. She is dedicated to making the cancer experience better for future families. Amy is an enthusiast of US presidential history; she aspires to be a professional seashell collector and is absurdly competitive about things that don’t matter. \nWe hope you will join us as we honor our loved ones\, support one another\, and remember—together. \nQuestions? Email Family Service at familyservicesteam@CdLSusa.org.
URL:https://www.cdlsusa.org/event/2026-international-cdls-remembrance-day-continuing-your-childs-legacy/
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DTSTART;TZID=America/Detroit:20260212T120000
DTEND;TZID=America/Detroit:20260212T130000
DTSTAMP:20260514T102711
CREATED:20260122T204808Z
LAST-MODIFIED:20260122T204808Z
UID:9955-1770897600-1770901200@www.cdlsusa.org
SUMMARY:Día Internacional de Conmemoración del Síndrome de Cornelia de Lange
DESCRIPTION:El 12 de febrero de 2026\, nuestra comunidad CdLS de todo el mundo se reunirá para un\nencuentro muy especial: el Día Internacional de Recuerdo CdLS.\nEste será un espacio creado con amor para honrar a nuestros hijos y seres queridos\, recordar sus vidas y acompañarnos unos a otros con compasión y cariño. \nRecordar no es solo pensar en lo que hemos perdido\, sino también reconocer el amor que\npermanece y el significado que seguimos construyendo juntos. Encuentro posterior en español – Acompañamiento y reflexión para familias. Después del evento principal\, las familias están invitadas a quedarse con nosotros para un encuentro especial en español\, enfocado en el acompañamiento\, la reflexión y la conexión\, a las 12:00 p.m. (Hora del Este\, EE. UU.). \nhttps://bit.ly/4b57pcB \nEste espacio contará con la participación de:\nCarolina Cárdenas Vargas\, MS \nCarolina Cárdenas Vargas es psicóloga\, especialista en neuropsicología y profesional en enfermedades raras\, con más de 15 años de experiencia acompañando a personas y familias. Cuenta con una Maestría en Enfermedades Raras por la Universidad de Valencia y es profesora de posgrado en neuropsicología y neurorrehabilitación.\nHa sido reconocida por la Federación Colombiana de Enfermedades Raras por su liderazgo y compromiso con la atención y el acompañamiento de familias. A través de su trabajo con la Fundación Cornelia de Lange\, ha desarrollado iniciativas de apoyo y ha ofrecido conferencias para familias que atraviesan procesos de duelo\, memoria y sanación.\nAgradecemos especialmente que hayan sido las propias comunidades de habla hispana quienes solicitaron la participación de Carolina — reflejo de la confianza y la conexión compasiva que ha construido con las familias.
URL:https://www.cdlsusa.org/event/dia-internacional-de-conmemoracion-del-sindrome-de-cornelia-de-lange/
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DTSTART;TZID=America/Detroit:20260212T180000
DTEND;TZID=America/Detroit:20260212T190000
DTSTAMP:20260514T102711
CREATED:20260122T213619Z
LAST-MODIFIED:20260122T213619Z
UID:9957-1770919200-1770922800@www.cdlsusa.org
SUMMARY:Continuing the Legacy of Your Loved One
DESCRIPTION:United States families are warmly invited to join us for an English-language gathering focused on connection\, reflection\, and emotional support at 6:00 p.m. (Eastern Time\, U.S.). \nRegister here for the 6 p.m. event \nThis space will be led by: Amy Graver\, Bereaved Champion at Courageous Parents Network.\nAmy Graver currently works in the corporate world and is a writer\, a wife\, and a mom of four. Her daughter Lauren was diagnosed with rhabdomyosarcoma at age 7. Amy’s writing chronicles the journey that cancer has taken her family. Lauren’s cancer diagnosis imposed a new reality and a new perspective on life. She is dedicated to making the cancer experience better for future families. Amy is an enthusiast of US presidential history; she aspires to be a professional seashell collector and is absurdly competitive about things that don’t matter. \nWe hope you will join us as we honor our loved ones\, support one another\, and remember—together. \nQuestions? Email Family Service at familyservicesteam@CdLSusa.org.
URL:https://www.cdlsusa.org/event/continuing-the-legacy-of-your-loved-one/
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