I have congenital melanocytic nevi (CMN), this is a rare disease that affects roughly 1 in 20,000 people. When I was growing up there was little information, doctors really didn't know anything about it, and there wasn't an opportunity to network with others. For people of my generation and older, it was an isolating experience and our parents had to be guided by doctors who didn't really have any answers. 

Caring Matters Now is a charity that was set up 25 years ago, by someone with CMN.  It is dedicated to supporting people and families affected by the condition. They help raise awareness as well run events for people with CMN to meet. Last year I met other people with it for the first time in my entire life!! I can't describe how amazing that felt. Young children today no longer have to go through life thinking they are the only ones with this condition, and without knowing anyone who understands. Parents are able to connect with other parents for support. The charity also has a strong relationship with a CMN specialist and they run events with the specialist presenting her current research, as well as giving us access to ask questions. 

The charity also contributes to funding research. This is so incredibly important. The research has progressed our understanding of the disease, and aims to improve the quality of life and outcomes for patients with CMN. It is vital because there are some potential complications from CMN, as well as the obvious psychological aspect, nevi can form on the brain and result in seizures, and unfortunately there is an increased risk of melanoma.