AUSTRALIAN KABUKI SYNDROME ASSOCIATION INC.

 

NATIONAL FAMILY DAYS

 
 
 

National Family Days are organized for caring, sharing and having fun. They are usually held in a different State or Territory each year depending on where the kind and energetic person / people live who offer to host the day. The National Family Days are supported very generously by the general public, service clubs and businesses by way of providing for the day and monitory support for families to be able to travel and have accommodation whilst attending the functions.

From these National Family Days the persons with the condition of Kabuki syndrome, their parents and siblings have formed bonding friendships and look forward to the next meeting. This is often the first time some families have had contact with another family who has a member with the condition of Kabuki syndrome. As Kabuki syndrome is little known to both medical persons and the general public the parents / guardians gain great strength making use of this valuable time for networking, sharing their child’s achievements, exchanging health and child care management, whilst generally supporting and encouraging one another.

The children / young adults respond to meeting new friends who are “just like me” and have an enjoyable time and look forward to further contact.

The need for families to have contact with other persons who have similar problems / understanding of Kabuki syndrome is so great that they will travel the breadth of Australia to attend.

This is also a time for professional educational input to enhance the wellbeing of persons with the condition of Kabuki syndrome.

NATIONAL FAMILY DAY 2009

Families met this year at The Monastery, a grand unique villa styled resident and conference centre. It stands amongst century old trees at the beginning of the Adelaide foothills in South Australia. The weather was kind with everyone enjoying the sunny, spring, September weekend.

During the first evening we all walked though the gardens with lighted balloons to remember all the persons, with Kabuki Syndrome, who are now no longer with their family, and to reflect how fortune we are to share our time together.

The children and young adults enjoyed many activities which included visiting a venue at the beach for rides, games and fun, a visit from a couple of musical monkeys who entertained both young and old and a visit from members, of a motor cycle club, who gave everyone rides around The Monastery’s adjoining oval.

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Saturday evening, Halloween was celebrated (a little early), with everyone under the spell of friendly witches and devils, enjoying games, competitions, prizes and sweets.

During the day, while the children were enjoying their activities, the parents and friends attended an education forum, the Association’s Annual General Meeting and a General Meeting. Again, this year, during the forum our children and young adults were in the care of some very special people namely, Simon, Rachel, Tim, Melinda and David the driver.


EDUCATION FORUM 2009

Five professional presenters gave interesting updates on information pertaining to the well being of persons with the condition of Kabuki syndrome.

Dr. Elizabeth Thompson, a clinical genetist, discussed recent research and different conditions associated to Kabuki syndrome. This session provided time for questions and group discussions. Statistics of the number of cases in Australia and world wide were created much interest.

Rick Neagle, now President of Dignity for Disabled, spoke of the difficulty in obtaining assistance and funding for the disabled and the involvement he has in trying to improve the situation.

Alison Forest talked of her role in improving nutrition for children, in particular those children with feeding difficulties.

Jo Bakewell, a speech therapist, gave an informative view on her role, working with children with hearing impairment and speech therapy.

Simon Fuller, a teacher for children with special needs, describe his work with children learning ‘Maths N Music’. This session is describe under workshops

WORKSHOPS

This year we introduced two workshops for the children and young adults.

Math N Music.

This was presented by Simon Fuller, a teacher for children with special needs.

Simon conducted two workshops. The children’s workshop was a conglomerate of fun games and short activities over two hours that focused in enhancing memory, attention and discrimination. Most of the children reported back on the fun nature of the workshop rather than the things that they had learnt.

After the session Simon reported back to the parents and friends on the theoretical basis of his children’s workshop. Simon showed an interactive presentation that even tested the memories of some of the adults! It was received by all, and made many think about possible instructional approaches that could be used in schools.

Magic Moving Portraits – ‘The Magic of Me’

Faith Thorley, teacher, artist and art therapist, with help from friend, Margaret Watson, conducted a creative session with parents, grandparents and friends all joining in with the children
The afternoon commenced with Faith and Margaret reading a magical story and all receiving a ‘Magic’ stone,

Craft tables were set up with crayons, glue and items to enhance each person’s magic portrait.

Large sheets of cardboard with a hole for the face to shine through were placed on the floor and each ‘artist’ lay on the cardboard while other family members drew an out line of their body.

The young artists were very creative designing, hair and head adornments and garments in the latest fashion or their favorite character.

When all portraits were completed, all the artists proudly displayed their work.

 

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NATIONAL FAMILY DAY 2008

The National Family day, 2008, was an over whelming success. All the families who attended enjoyed the weekend so much that plans are underway for a similar event next year.

Held in the beautiful grounds of the Collaroy Centre, over looking Collaroy Beach in New South Wales was an ideal setting for families to enjoy a weekend together.

Standing on the hillside, looking across to the ocean, listening to the Kookaburras calling from the gum trees in the early morning was truly a wonderful Australian feeling.

The children and young adults had an action packed weekend, enjoying games organized by instructors from the Collary Centre.

Alex., one of the children’s companions, was on hand to oversee the children’s safety and helped the children with their activities. Alex enjoyed being with all the young people and is looking forward to being a part of our National Family Day next time we re in New South Wales.

The smaller children were under the care of Nicole, who ran a very busy crèche. We thank Alex. and Nicole, both teachers, for their expert professional care to our children. Having companions for the children gave the parents a worry free day so they could take part and enjoy the Education Forum.

Friday night commenced with families catching up, renewing friendships and meeting new members before going on a night hike along the beach.

The children enjoyed a range of activities from archery, high rope swings, puzzles, ball games to canoeing on the Narrabeen Lake.

On Sunday we were entertained by two clowns, Zac and Caz, with tricks, balloon shapes and face paintings. No age limit here. Spotted in the crowd were people aged from two to seventy years of age.

Before farewells were exchanged, the weekend ended with a Birthday celebration, for one young lady who was having her 13 th Birthday the following day. It was also a time to acknowledge every child / young adult’s Birthday with all receiving a present.

 

THE EDUCATION FORUM 2008

The day began with Association’s Annual General Meeting. This was followed by guest speakers during the day.

Mrs. Pamela Templeton, an educator for children with special needs, described how children are assessed for educational requirements and how to ensure your child is receiving the education most suitable for his /her needs.

Dr. Charles Kathopoulas a chiropractor, out lined the benefits that can be gained by having certain conditions treated through the techniques used in chiropractic care.

Both Pamela and Charles are members of the Association and traveled long distances to support the families to share their knowledge with us.

After lunch, Dr. Anne Turner a genetist, described the many aspects peculiar of Kabuki syndrome, giving parents answers to their concerns re their child’s condition / development.

Our last presenter for the day was Gayathri Parasivam a genetic counselor. Gayathri went through the steps of counseling and how people may deal with adverse changes to their lives.

This session drew much discussion and interaction with the audience. Dr Anne Turner was in attendance to answer any medical questions.

We thank our guest speakers for their professional support and interest afforded to the Families of the Association.

 
         

 

NATIONAL FAMILY DAY 2007

 
 


NATIONAL FAMILY DAY 2010

   
   


 

 


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AUSTRALIAN KABUKI SYNDROME ASSOCIATION INC.2008