RSAA President recipient of an Order of Australia medal (2012)
Bill Callaghan, who has been President of RSAA since its formation in 1989, was awarded the Medal of the Order of Australia in the Honours announced by the Commonwealth Government of Australia on the Queen’s Birthday in June 2012. Bill’s daughter, Joanne, was diagnosed with Rett syndrome in 1986. She died in 2004, 11 days before her 33rd birthday. Please click here for further information on Bill’s award
Northern Territory (NT) Young Australian of the Year 2014, was 19 year old Nhulunbuy resident, Emily Osborne, for her work as a youth advocate.
A passionate advocate for young carers, Emily Osborne understands the responsibilities that rest on the shoulders of young carers. She looks after her older sister Kaia, who suffers from Rett syndrome. Emily said that Kaia has taught her to cherish every moment, and had motivated her to be the best person she can be. Additional information on Emily’s award can be obtained by clicking on the following link
Successful High Tea held in Perth to fundraise for Rett syndrome research and generate awareness of the condition (2014)
A High Tea for Rett Syndrome was held at the Caversham Marquee, Perth, on 2 November 2014, to raise funds for Rett syndrome research conducted at the Telethon Kids Institute (Perth) and improve awareness of the disorder. Two hundred people, including at least 9 Rett girls, were present.
Narelle Read, Teresa Pracilio, Melanie Kenneally and Caroline Fitzpatrick, all mothers with a Rett syndrome child, with the support of other family members, actively saw that everything went to plan on the day which is exactly what happened. Around $30,000 was raised, an outcome which befitted the work put in and the energetic and generous support of those in attendance. A video snapshot of proceedings, created by Tonita Photo & Video, can be viewed by clicking on the following link http://youtu.be/i08LB8HDTWg
A highlight of proceedings was the showing of a video in which Dr Helen Leonard, Principal Researcher for the Australian Rett Syndrome Study, spoke of the work of her team, while parents and siblings spoke of their lives with Rett syndrome. It is a professional production, the comments are relevant and informative, and is a valuable resource on the syndrome, particularly for a family whose young child is just diagnosed. The video can be viewed by clicking on the following link http://vimeo.com/110741678