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 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

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