In our latest newsletter is a page on Fragile X Awareness Day, held on July 22nd every year. Many of our members supported the Day with fundraising and other events but the efforts of two members should be noted.  Margaret Tappert, a Taree grandmother of Fragile X Syndrome children, contacted her local media and managed to have a great article published in the Manning River Times.  Thank you Margaret.

Michael and Heather Hart decided to increase awareness by having a Fragile X presentation and invited local professionals. They had a successful morning with many professionals invited.  The speech & language pathologist, Tracey Ellaby, gave a full presentation explaining how speech and language affects Fragile X children and the techniques used to enhance their ability.  Dr Mary Varughese, Grafton Hospital’s paediatrician, gave a talk on what Fragile X Syndrome means and how it can affect their lives.  Joshua’s and Jarrod’s school teachers, Melanie Pitt and Michelle McDonagh, from their support units at Grafton Public School, also assisted in answering questions from the public and explaining how they teach the boys and the techniques that work best for them.

The Salvation Army Church assisted the Harts with many of the ladies helping to prepare and serve the morning tea.  They also expressed concern for the family and wanted to understand how they could best communicate with the boys. Clarence Valley Community Programs (a respite organisation) also wanted to understand the syndrome better.

Last, but not least, Michael gave a great in-depth presentation from, how you get Fragile X Syndrome and the scientific facts, to where we are today and what it means for Joshua and Jarrod.

The Harts wonderful friend/helper/ABA therapist also expressed her knowledge and what she has learnt about ABA and how it has helped Jarrod become the boy he is today.

Heather and Michael would like to thank all those that assisted us in making the Fragile X Awareness morning a success.

Downloads of talks can be obtained from:

http://www.mixstatics.com.au/FXAwarenessDay2008.ppt

http://www.mixstatics.com.au/FragileXSyndrome_SpeechLanguageTherapy.ppt