Fragile X Awareness Day
22nd July 2010

Fragile X Awareness Day on July 22nd is to promote the awareness of Fragile X syndrome. The incidence of Fragile X can be significantly reduced through awareness and early intervention assists in providing support and strategies to
help improve the quality of life of a Fragile X child. In Australia, it is estimated that one child every week is born with Fragile X and twelve are born carriers.

Please support the Fragile X Association of Australia through Fragile X Awareness Day by holding morning teas, having sausage sizzles or just talking about Fragile X syndrome to your family, friends and colleagues.  Fragile X Awareness events can be held throughout July.

If you are holding an event please contact the Fragile X Association on 1300 FX INFO (1300 394 636) for information on fundraising.  We have posters available that were designed by RU Advertising and printed by Sydney IVF.  Also we have pens and ribbons for sale for $2. Just contact Jocelyn or Bernadette at the office to order your supplies.

If you are a school or organisation, please download our schools package

Fragile X teams in 4 city fun runs!

• Run Melbourne July 18, 2010,: to date we have 4 participants in RunMelbourne on Sunday July 18.  Jannine Davey, Kelly Amore, Sarah Donahue and Brendan Fitzgerald. You can sponsor them through the Everyday Hero website:  

  http://runmelbourne.everydayhero.com.au/

• City2Surf August 8 2010: we have a team running in the City2Surf on Sunday August 8. If you are interested in being part of the team you will need to register in the City2Surf http://city2surf.com.au/. You can be part of the fundraising by creating your own fundraising account. Register on http://www.everydayhero.com.au/Fragile_X_2010 and click on Join this team in the top right hand corner of the fundraising page. You then create your own fundraising page and follow the prompts – the team password is ‘fxteam’.  It is a wonderful opportunity to meet other fragile X families and be part of the general atmosphere that the City 2 Surf creates.   At the conclusion, the Kellehers will run the usual BBQ (this is a fun occasion especially for our FX kids) at their home.  

•  Bridge to Brisbane August 29, 2010: The Bridge to Brisbane is on Sunday 29 August and we will be having a team.  

• City-Bay September 19, 2010:  The Adelaide City-Bay is on Sunday September 19 and there will be Fragile X  team.

We will be updating this post for the Brisbane and Adelaide fun runs once the teams have registered.

The Fragile X Association of Australia would like to thank  Pages and Pages of Mosman, Sydney, and The Constant Reader of Crows Nest, Sydneyfor their support in selling our Christmas cards once again this year. Pages and Pages have been selling our Christmas cards for many years and this is the third year that the Constant Reader have stocked our cards.

The Association would also like to thank all our other supporters who have purchased cards this year.  We now only have limited quantities left.

Monday 19th October marks the start of Carers Week 2009. Carers Day 2009 is on Tuesday 20th October. Carers Week is aimed at celebrating and acknowledging the vital role carers play in our society whilst giving carers an opportunity to get together to share support and information..

Carers Australia CEO, Joan Hughes, recently launched a new Carers Week Website . There you can find details of the events that are taking place in your state throughout the week as well as participate in various forums which give you the opportunity to share your experiences and have your say. Events vary from state to state and include talks, morning/afternoon teas, luncheons, and various types of entertainment and relaxation sessions.

Carers Week 2009 is an initiative of Carers Australia. You can find out more about the services provided by Carers Australia on the: Carers Australia and Young Carers.

The National Fragile X Foundation has been producing audio webcasts covering various aspects of Fragile X. They are available to listen to from their website on the Prior Audio Webcasts page

Topics to date::

• “Thriving Not Just Surviving: Family Self-Care” with Diane Simon Smith, M.P.H., MA, M.F.T. ,  Carolyn Krull Toennessen, Aerospace Industry Project Manager and Jayne Dixon-Weber, NFXF Support Services Coordinator.
• “Let’s Get Going: Toileting Ideas” with Karen Riley Ph.D. and Cindi Rogers
• “Coping with and Adapting to the FXS Diagnosis” with Brenda Finucane MS, CGC and Joe Garera, Parent and Leader of the Greater Cincinnati & Nth. Kentucky Resource Group
• “Educating Teachers and Students about Fragile X; Why it’s Important and How to do it” – Arlene Cohen and Lisa Kelley, parents of children with fragile X syndrome, share their experiences and techniques
• “ABCs of FXS: Steps for New and Improved Behaviors” with Fragile X specialist, Karen Riley, PhD
• “Fragile X Syndrome: Treatment of Difficult Cases,” – a three-hour webcast broadcast from Children’s Hospital Denver on July 20, 2007

If you want to be kept informed of upcoming webcasts as well as receiving other news from the NFXF please sign up for their email newsletter.

The Australian and New Zealand National Fragile X survey has been extended until the end of October

This study is the first national survey of families in Australia and New Zealand who have a child with fragile X. The results of the survey will be shared with fragile X organisations, researchers, and legislators to help change policy and improve practice.

Although many studies have been conducted with families of children with fragile X, this study will be the first in Australia and New Zealand to survey a large number of families. Your participation will provide researchers with a national picture of the needs of families with a child who has fragile X.

All information collected will be kept confidential. Your answers will be combined with the information we get from other families and any links to names or addresses will be removed prior to data analysis. Individual answers and names will not be published in any study report or disclosed to any individual or organisation.

ENROL NOW!

To participate, simply visit the website at https://fragilex.rti.org/ and complete the questionaire online or call 1300 FX INFO (300 394 636) to arrange an interview.

Fragile X Awareness Day
22nd July 2009

Fragile X Awareness Day on July 22nd is to promote the awareness of Fragile X syndrome. The incidence of Fragile X can be significantly reduced through awareness and early intervention assists in providing support and strategies to
help improve the quality of life of a Fragile X child. In Australia, it is estimated that one child every week is born with Fragile X and twelve are born carriers.

Please support the Fragile X Association of Australia through Fragile X Awareness Day by holding morning teas, having sausage sizzles or just talking about Fragile X syndrome to your family, friends and colleagues.  Fragile X Awareness events can be held throughout July.

Last year we had families hold mini seminars and hosting awareness morning teas at their workplaces.  If you are holding an event please contact the Fragile X Association on 1300 FX INFO (1300 394 636) for information on fundraising.

If you are a school or organisation, please download our schools package

On looking up our webpage Brenton Phillips was disappointed to see that there was no Parent Support Group in South Australia so he decided it was time to start one up!

Brenton would love to get in touch with other families in South Australia who are affected by Fragile X. He is keen to organise family days and give representation to other families with Fragile X children and Fragile X adults in South Australia. Anticipated activities include family days, workshops and parent support.

Brenton

Brenton is the father of 2 boys, the youngest, Matthew, has Fragile X Syndrome.

Matthew wasn’t diagnosed until he was 41/2 and therefore missed out on early intervention which made life difficult as his speech and communication skills were delayed. Matt is in year 5 and loves his cricket and footy. He is a very stylish left handed batsman and when he first started playing in C Grade with mainstream kids, the others thought he wouldn’t be any good, they soon found this out to be wrong when Matty smashed them all over the ground!

Matthew is very close to his older brother and has a wicked sense of humour as you can see from some of the photos here.

If you wish to contact Brenton regarding the South Australia Support Group please visit our South Australia Page for details