© 2015 Nevus Support Australia PO Box 262, Seacliff Park, South Australia 5049  

Danielle shares the story of our beginning

ABN: 23543860400
This information on this website is for general information purposes only. It is not intended as a medical reference. Please talk with your doctor for medical advice.
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.