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In November 2001 our daughter Danielle was born with a rare birthmark condition called Congenital Melanocytic Naevus. We thought we were the only ones dealing with this condition. We were afraid and felt very alone, we wanted to know how to help her with this condition. There was no support group available in Australia. What we needed most was to talk to other families who had been in the same position that we now found ourselves. Not content to give up we continued searching for answers and with the help of an American support group Nevus Outreach we eventually made contact with several families in Australia who also had children with this condition. Our first contact was Tracey and Troy Wood from Victoria who’s daughter Meg had a nevus, Meg was about eight months older than Danielle and they had located a number of families in Australia. Tracey and Troy provided us with so much support and hope. We all wanted to make a difference. It was exciting for us to find others to talk with and understand the condition better. As we spoke to the other families it became apparent that everyone had had similar experiences of isolation and a desire to connect with other families.
Today Nevus Support Australia has a membership of over 300 families incorporating New Zealand and southern Asia. We are working collaboratively with support groups and researchers around the world to provide members with the latest information and treatment options for this very rare condition. We hold regular bi annual conferences so that our very special families can meet each other and share our journeys. In a nevus first, we held our first youth camp for CMN Youth aged 12 – 21. The two day camp in January 2015 had 20 participants that enjoyed swimming with dolphins and a Hills adventure day with a challenging high ropes course. The group had an opportunity to hear from the melanoma institute and leading health experts on CMN.
Nevus Support Australia is run completely by volunteers, we rely entirely on donations and sponsorships to maintain our services and to support research into pigmented skin conditions and associated conditions including melanoma, neurocutaneous melanocytosis (NCM) and hydrocephaly.
In 2002 we decided to form our own support group for Australian families and Nevus Support Australia blossomed. Our goal was to develop a brochure about the condition for our group, send to doctors offices and major hospitals all around the country and get as many families from around Australia to come together. In January 2004 we were holding our inaugural conference in Adelaide where we launched our first brochure.