Haydn Radford -A freelance writer born in Adelaide, who loves living here. I write about movies, theatre, entertainment, literary and art events. I am happy to promote & review your events. www.weekendnotes.com/profile/121822
You are invited to a fundraising High Tea with Nevus Support Australia Inc. at Marion Bowling Club, 262 Sturt Road, Marion, S.A. on Sunday 26 July, 2015 - the fun begins 2.00 pm.
This fundraising event will support youth with a visible skin condition (CMN) to be able to connect and share experiences, by creating a positive environment to build their self esteem and coping strategies.
Ticket includes High Tea, entertainment and lots of fun. Loads of raffles and prizes on the day, so bring your gold coins. The bar will be open, but is not included in the ticket price.
In November 2001, Danielle was born with a birthmark condition called Congenital Melanocytic Naevus. Danielle's parents thought they were the only ones dealing with this condition. Understandably, they were afraid and felt very alone. They wanted to know how to help her with this condition, but there was no support group available in Australia. And there is no known cause and no known cure.
Vvideo narrated by Danielle our inspiration behind us forming the first Australian support group for the rare condition called congenital melanocytic nevus.
In the following weeks, her mother, Michelle, father, Alan and Grandmother, Marilyn spent hours upon hours researching Congenital Melanocytic Nevus (CMN). Everything they found was American. "What we needed most was to talk to other families who had been in the same position that we now found ourselves," said Michelle.
With the help of a social worker at the Women's and Children's Hospital, Adelaide, a small group of Australian families was contacted and a meeting arranged. So Nevus Support Australia was launched. The group continues to grow.
Every two years Nevus Support has had a Family Camp/Conference where as many people as can, come from all over Australia, New Zealand and Malaysia and for a few days there are activities for the children and lectures for the adults.
Living with a potentially life threatening condition is not easy. This has an effect on the whole family. Photo courtesy of Jess Hartley.
Our first big Conference was at the Women's and Children's Hospital and specialist gave their time free of charge, as they have done at each following Conference. Sadly some children and adults have died of melanoma associated with nevus.
Challenge Hill Camp - We can't always do the same things other kids our ages can do. Photo courtesy of Jess Hartley.
Recently, we have become aware that some of teens have been having mental health problems. Some have thought of suicide. Some are embarrassed about their skin and withdraw from life. Others won't wear clothing that shows any part of their nevus. Some think no-one will ever love them or want to marry them. If the nevus is on their face or neck, as many are, this makes life extremely difficult for them.
Spending time together is important. It helps us feel less alone, less isolated. Photo courtesy of Jess Hartley.
Their self-esteem and self-confidence is low. They find it hard to trust people because of the awkward questions people ask and the thoughtless things said, not just by children but adults as well," said Michelle.
In January 2015, in conjunction with a Family Camp/Conference, Nevus Support held its first event specifically for those in their teens and early 20s. The Nevus Youth Group was born and was such a success, the director of Nevus Support Australia, Michelle, wants to hold another Nevus Youth Camp again in 2016.
It is great to be with people who understand what our daily challenges are like. Photo courtesy of Jess Hartley.
To this end, Nevus Support is holding a fundraising High Tea on July 26th 2015, at the Marion Bowling Club, Sturt Road, Marion, opposite the Marion Council Chambers.
THE PROGRAM: The High Tea includes: food, fun, raffles and entertainment. The bar will be open but is not included in the $25 ticket price.
Rosie Aust. Mistress of Ceremonies.
MISTRESS OF CEREMONIES: ROSIE AUST: is well known for her work with The St Jude Players. In 2014 Rosie was awarded 'Director of the Year' for the play presented by St Jude's, Wrong Turn at Lungfish. Rosie is also a member of Holdfast Bay Council.
The Kingpins - 3 Piece Folk/Rock Band who play Folk/Country/Indie/Rock with some Humour included.
ENTERTAINMENT - THE KINGPINS:
A local Acoustic, 3 Piece Folk/Rock Band Band with Rick on Acoustic Guitar and Vocals, Buzz on Acoustic Guitar, and Paul on Percussion, who play Folk/Country/Indie/Rock with some Humour included.
Some may know Rick as he teaches beginners guitar, from home and also at Adult Education at the Woodcroft and Morphett Vale Neighbourhood Centre, running a first and second year course.
Buzz the other guitarist was one of Rick's private students, and is a mechanic with his own business. Paul the Percussionist is retired, and is also a drummer, and a very talented artist.
If you cannot attend but would like to help us, you can buy a 'virtual ticket'.
Please phone Marilyn on 08 8296 8642.
To find out more about Nevus, go to www.nevusupport.com and Face Book.
Nevus can land anywhere. There is no known cause and no cure, yet.