News and events

2012
Living with Rett syndrome

In issue 46 of That's Life magazine Perth mother Teresa Pracilio describes the time around her daughter Kayla's (4) diagnosis and her search for answers about her daughter's condition. Accompanied by a beautiful photo of Kayla with her family, this story raises awareness about Rett syndrome. 

Help Jovie Hoyng overcome Rett Sydrome with Rebel Sport Run4Fun

Jovie Hoyng (4) and her family  were featured their local paper Rouse Hill Times on September 25 to raise awareness and funds for our Rett syndrome research. Jovie's family will be taking part in the Rebel Sport Run4Fun on November 4 and encourage the community to join or sponsor them in this community event.

2011
Family hope little steps lead Chloe closer to cure

Chloe Corfield (9) and her family were featured in a front page article in the Fremantle Gazette in the December 27 issue to raise awareness of Rett syndrome and how important physical activity is for health. 

2010
High Tea for Rett Syndrome
Teresa Pracilio and her 2 year old daughter Kayla were featured in The West Australian raising awareness of Rett syndrome and promoting the 'High Tea for Rett Syndrome' fundraising event which Teresa had been instrumental in organising.

2009
Possible treatment for Rett syndrome
Mikayla Kennelly (3) was on the front page of the West Australian with her family, mother Melanie, father Bryan and brothers Connor and Lachlan raising awareness of  Rett syndrome and the effects on Mikayla's life. Dr Helen Leonard was quoted on a possible treatment for Rett syndrome targeting the BDNF gene.

2007
University of Western Australia article on using web-based data on disability to make a difference.
University news

2006
Rett syndrome diagnosed in boys
The West Australian newspaper reported on the diagnosis of Rett syndrome in a Perth boy who had died years earlier of an unexplained cause. Dr Helen Leonard had recently published a paper revealing that an increasing number boys have been diagnosed Rett syndrome, previously thought only to occur in girls.

2005
Diagnosing Rett syndrome from a baby tooth
The West Australian reported the story of how scientists from the Telethon Institute of Child Health Research, the WA Institute for Medical Research and PathWest were able to diagnose Rett syndrome from genes taken from the baby tooth of a girl who had passed away 14 years earlier, giving relief to her parents.

2003, February

A feature on Hope Craft and artist Keith Green
Hope Craft, a 12-year-old girl with Rett syndrome was pictured in the Community Newspaper (Geraldton, WA) along with local artist Keith Green. She was featured for her response to the paintings that helped transform an old library into a multi-purpose sensory room at Hope's school.

2003, January

Media release on a study evaluating RettNet, an email list-serve
During 2001 an Internet based survey was carried out by three UWA medical students as part of the Australian Rett Syndrome Study. The aim of the study was to evaluate the "RettNet", an email list-serve which is provided by the International Rett Syndrome Association.

2002, April
Media release on the Health diary project
During 2002 high school and university students were able to take part in important research by completing a 'health diary' on the Internet. This builds on the study conducted in 2000 when data were collected from primary school children. The purpose of this study was to collect data on the health of children and young people without Rett syndrome. This enables us to make comparisons on the health and wellbeing of children with Rett syndrome with those who do not have Rett syndrome.

2002, February
Amazing 3- month around-the-world charity flight
In late January, Hungarian pilots Andor Kantas & Csongor Latki completed an amazing 3-month around-the-world charity flight when they landed in Sydney. The purpose of the flight was to raise awareness of Rett syndrome.

2001
The West Australian features an article on Rett syndrome to increase public awareness of Rett syndrome. The article featured Elise Bozsan who is affected with Rett syndrome and 52 girls from St Mary's Anglican School who were taking part as a control group in the calendar study.

2000, October
The West Australian published an article on Gold medal winning Olympic cyclist Brett Aitken and 10 year old Zainah Faydi. "Both Brett and Zainah share a common interest. Brett's two year old daughter and Zainah have Rett syndrome". Both Brett and Zainah met at the Telethon Institute for Child Health Research where Dr Helen Leonard and research assistants have been studying the epidemiology of Rett syndrome.

2000, November
Dr Helen Leonard was invited on Body Talk, a South Australian radio programme. She promoted Rett syndrome and described the latest research.