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DTSTART;TZID=America/New_York:20260506T180000
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SUMMARY:Parents of VHLers: Navigating Care\, Emotions\, and Growing Independence
DESCRIPTION:Date & Time: May 6\, 2026 at 6:00 PM ET\nLocation: Virtual (Zoom)\nRegistration link: https://us02web.zoom.us/meeting/register/8C0h7JYFRKmXUjoeB184BA#/ \n  \nParenting a child with VHL comes with unique challenges\, from balancing complex medical care to managing uncertainty and supporting your child’s emotional well-being at every stage. This webinar is designed specifically for parents and caregivers who are navigating these realities every day. \n  \nJoin us for an honest\, supportive conversation focused on practical strategies and shared experiences. Together\, we’ll explore how to manage the ongoing demands of care while also making space for your family’s life beyond VHL. \n  \nDuring this session\, we’ll touch on: \n  \nNavigating the Medical Maze: Tips for managing the constant cycle of MRIs\, screenings\, and specialist visits without becoming overwhelmed\nBattling “Scanxiety” & Burnout: Real-world strategies to cope with emotional strain\, genetic guilt\, and the anxiety surrounding scan results\nHaving the Hard Conversations: Guidance on talking with children\, teens\, and others about a VHL diagnosis in a way that informs without increasing fear\nFrom Advocacy to Independence: Supporting your child in school and healthcare settings\, and preparing for the transition to young adulthood \n  \nThis webinar will be moderated by: \n  \nKimberly Parsley is a writer\, life skills coach\, and disability advocate who became blind at age 14 due to VHL. She currently serves as an Independent Living Specialist with the Center for Accessible Living and hosts “Demand and Disrupt: a Disability Podcast.” She lives in Bowling Green\, Kentucky with her husband and two children. \n  \nMiranda Di Biase\, MS\, CGC is a pediatric genetic counselor at The Children’s Hospital at Montefiore and a new VHL Clinical Partner. She is dedicated to supporting families through diagnosis\, care planning\, and long-term management. \n  \nWhether you are newly navigating a VHL diagnosis or have been on this journey for years\, this session offers a space to learn\, connect\, and feel supported alongside others who understand. \n  \nThis event is brought to you with support from: 
URL:http://vhl.org/vhla-event/parents-of-vhlers-navigating-care-emotions-and-growing-independence/
LOCATION:Zoom / Online
CATEGORIES:Workshop
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