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2024 Meeting Dates
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When: Saturday November 4 2023 10:30AM - 11:45AM PT Where: Via Zoom (Email CureUndx@gmail.com to receive meeting link) Kevan Chandler, Founder of We Carry Kevan How We Carry Together When: Saturday September 16 2023 10:30AM - 11:45AM PT Where: Via Zoom (Email CureUndx@gmail.com to receive meeting link) Dr. Arvnid Chandna, Senior Clinician Scientist/Chief of Clinical Vision Research, Smith-Kettlewell Eye Research Institute, San Francisco, USA Consultant Paediatric Ophthalmologist/Director of Research Eye Department, Alder Hey Children's Hospital, Liverpool, UK Cerebral Visual Impairment within the context of Brain-Based Dysfunction Although Mother’s Day celebrates all mothers around the world, there are many mothers who struggle to celebrate the day. A mother’s instinct to nurture and protect their child remains the same even in the event of their death. Mother’s Day is a bittersweet day mothers who have experienced loss of their child. They feel immense joy because they were blessed with their child and feel gratitude for every moment she was given with them. Yet on the other hand, the pain of missing their child every day is intense. Bereaved mothers live with many confusing contrasts that tug at and toss about in their hearts and minds. There is no greater sorrow in all the earth than that of losing a child. Not only does a bereaved mother’s heart bleed but her arms ache to hold their precious child. Their grief lingers and changes like the weather. Somedays it’s calm, quiet, maybe even a little sunny. Other days it’s a devastating storm that makes them angry, sad, exhausted, raw, and empty. They miss their child every day. And of all days, it is especially difficult on Mother’s Day. They want to celebrate the child they carried, birthed, and nurtured. They want to bask in who they have become, not recall who they were. They long to see them alive, hold them close and inhale the scent that was only theirs. Here I ask you to help by: Remembering all mothers whose child cannot be seen. Acknowledge the child who lives in her heart and not in her arms so that she is not isolated in her grief. Be understanding why bereaved mothers might avoid public Mother’s Day celebrations, and instead visit the cemetery to see their son’s or daughter’s name written because no one speaks it anymore. Tell her she is courageous. She has survived the unimaginable and managed to crawl out of bed yet again today. Give her some space to grieve and a moment of peace to rest. Know that she will be okay. May this day be for bereaved mothers to speak honestly, remember, celebrate, and heal. May they hold onto hope when all seems dark, find joy and inspiration to keep moving forward. My heart goes out to all those brave mothers grieving on Mother’s Day. Caroline Cheung-Yiu Founder and Patient Advocate Complex Undiagnosed Rare and Extraordinary (CURE) When: Saturday July 15 2023 10:30AM - 11:45AM PT Where: Via Zoom (Email CureUndx@gmail.com to receive webinar link) Wendy Smith Life Planning and HCBS Specialist, Home of Guiding Hands HGH Life Planning – An Overview When: Saturday May 20 2023 10:30AM - 11:15AM PST Where: Via Zoom (Email CureUndx@gmail.com to receive webinar link) Martha Murphy Leader/Founder, Dystonia Support & Advocacy Group of San Diego County Empowering Ourselves to Bring About Change When: Saturday March 11 2023 10:30AM - 11:45AM PT Where: Via Zoom (Email CureUndx@gmail.com to receive webinar link) Beth Thorp, Co-Founder/Executive Director Mitchell Thorp Foundation Tragedy to Triumph |
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