Parents of VHLers: Navigating Care, Emotions, and Growing Independence
May 6 @ 6:00 pm - 7:00 pm EDT
Free
Location: Virtual (Zoom)
Registration link: https://us02web.zoom.us/meeting/register/8C0h7JYFRKmXUjoeB184BA#/
Parenting 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.
Join 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.
During this session, we’ll touch on:
Navigating the Medical Maze: Tips for managing the constant cycle of MRIs, screenings, and specialist visits without becoming overwhelmed
Battling “Scanxiety” & Burnout: Real-world strategies to cope with emotional strain, genetic guilt, and the anxiety surrounding scan results
Having the Hard Conversations: Guidance on talking with children, teens, and others about a VHL diagnosis in a way that informs without increasing fear
From Advocacy to Independence: Supporting your child in school and healthcare settings, and preparing for the transition to young adulthood
This webinar will be moderated by:
Kimberly 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.
Miranda 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.
Whether 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.
This event is brought to you with support from:
