CACNA1E: Building a global community of care

Written by: Bianca, co-founder and leader (chair) of CACNA1E International and mother of Martin (3), who suffers from a severe form of the gene mutation and is battling the disease, and a healthy and active 1-year-old.

My organisation team and I are all parents of affected children; some are doing quite well, and some are not. We do all work voluntarily, in addition to caring for our disabled children.

CACNA1I: Growing our community with the VGCCC

Written by: Rachael Berzins, mom of four different needs children, a wrangler of various animals, living in the mountains in Northern California with a passion for advocacy and community.

Our children have many things in common. One thing they all share for certain is having parents who love them. We are all here to learn together while we’re navigating different variations of our children’s unique journeys. 

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