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.

Wynnum Carols by the Bay are being held on  December 19th from 3pm till 9pm at Wynnum Esplanade (George Clayton Park Wynnum), Brisbane, Qld.

Thanks to the Wynnum Spring Festival Association, proceeds from the raffles on the night will be donated to The Fragile X Association of Australia. Some of our members will be selling tickets on the night so please come down and say g’day.

The event kicks off at 3.00pm with a mini carnival, food, drinks and entertainment. The Community Carol singing will begin at 7.00pm and the evening ends with fireworks starting at 8.30pm.

We are pleased to report that the Fragile X Association of Australia has been chosen to be the main beneficiary of the proceeds from the Wynnum Spring Festival. The festival held in Wynnum, in the Manly bayside area of Brisbane, started out 87 years ago as a Spring Parade and now includes a week long festival of events.

Festivities begin on 3rd October with a Baby Show and Tots to Teens Show. If anyone is interested in entering their child in either of the shows you can download the entry forms here: Baby Show,   Tots To Teens

From Friday 9th October to Sunday 11th October a whole host of fun and entertainment, for all ages, can be found on the Wynnum foreshore including:  rides,  games,  food, drink,  stage entertainment including music, bands and dancers,  fireworks, trade and community displays and other “sideshow” entertainment. Further details

On Friday evening there will be a Lantern Parade and Fireworks Display

Saturday 10th October is the Wynnum Spring Parade day.which culminates in a Fireworks Display. Details of the Parade

Special events on Sunday include The “Classic” car and bike Show “Wynnum on Wheels” and the Wynnum Spring Festival Church Service.

Many thanks to the Wynnum Spring Festival Association for choosing our Association as the main beneficiary and to Mel Mikkelsen for all her hard work in making this possible.

In November 2009 the Fragile X Association of Australia are hosting Fragile X Update seminars in Melbourne, Sydney and Brisbane.  Professor Randi Hagerman and Louise Gane from the M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute in UC Davis in America  will present the latest information on developments in treatment of Fragile X syndrome as well as what is happening in research into Fragile X syndrome. Topics covered will include behavioural and interventional issues for the person with Fragile X; health issues for the carrier; educational, new treatments and advances in research.  Professor Hagerman will also cover all types of clinical involvement in premutation and full mutation individuals and all types of treatment with emphasis on  targeted treatments.

Download the seminar registration form for more information.

Seminar Registration Form

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  After the success of last year’s fundraising, the NSW team are again organising a Fragile X City to Surf team this year. Last year we were in the top 10 fundraisers and raised over $8000. This was a great achievement,so lets see what we can do in 2009! Getting involved in this event on August 9th would be a great opportunity to raise funds as well as providing an enjoyable (hopefully sunny) occasion for all involved.

If you are interested in being part of the team you will need to register in the City to Surf . Additionally, you can create your very own fundraising account as part of the Everyday Hero organisation.  Remember to put in the team password of cgk174 on the next page after creating your own page.  Go to Everyday Hero and register. 

After creating an account you can see the team’s participants and watch  fundraising figures grow as more kind people donate.  Through forwarding your fundraising webpage to your friends, colleagues and families they can donate a chosen amount to sponsor you in the run, from $5 to $500, every dollar raised is an excellent accomplishment in itself.

When you register we will also send you one of great Fragile X syndrome t-shirts  to wear on the run.  Last year’s team made a big impression with these black t-shirts. Just contact Christine or phone Jocelyn on 1300 394 636.

Our Queensland team are also having an active fundraising occasion, the Bridge to Brisbane on the 30th August 2009 .

Mel is also organising a Fragile X team to enter this event which will see an anticipated  40,000 participants of all ages and fitness levels take part in Queensland’s biggest annual fun run.  You don’t need to be an elite sportsman to join in on the 5km course, just run or walk your way to the finish line.

Please contact Mel Mikkelsen  if you are interested in promoting Fragile X awareness in this way and also help us to raise funds to support families affected by Fragile X syndrome. 

South Australia has also fielded a team in the City-Bay fun run on the 20th September. Kimberly and Mark Scott are running to raise awareness in South Australia.  You can support them by going to their Everyday Hero webpage to sponsor Kimberly.

MAKATON for Parents Evening

Presented by:

Amanda Hartmann & Alanna Mylne

Speech-Language Pathologists

WYNNUM ROAD HEALTH THERAPIES

Monday 11 May 2009

5 – 8 pm

Wynnum North ECDP

405 Tingal Road, Wynnum

Cost: $33 (inc. GST)

Tea, coffee and nibbles provided

This will be an informal event focusing on:

• What is Makaton and who can use it
• Learning some new signs
• Incorporating signs and symbols into your everyday life
• Practical ideas for ‘teaching’ Makaton to your child

Makaton uses a core vocabulary of speech, sign language, symbols and photographs to develop speech and language in children. It can benefit children with speech delays, as well as those with diagnosed disabilities.

More information:

Limited Places – Please call to reserve your place now – PH: 07 3907 0561

On December 20th, 2008, the Wynnum Christmas Carols were held at the Bandstand Park in Wynnum. The Spring Committee who organize the Christmas carols, chose Fragile X as one of the charities they would support at their fantastic carol event.

On the night of the carols, Janine Peate, Paul (my husband), Vince and Kate from the Ulysses Motor Bike Club, and I sold as many raffle tickets as we possibly could! It was lovely to have Kate and Vince on board help us sell raffle tickets at the markets for Fragile X syndrome. We are very appreciative of their kindness and sacrificing their Sunday’s to help us sell raffle tickets.

Garry Tom of the Spring Committee, gave us a lovely surprise. Garry heard about the Fragile X Association, and our need to raise money for research into Fragile X and other Fragile X related projects. Garry thoughtfully took it upon himself to organize his own FX raffle. Garry raffled off some meat trays, generously donated by the butcher’s at Save City in Cannon Hill, and fruit trays kindly donated from Perry’s Fruit Shop in Wynnum Central and from Wondall Road Fruit Barn in Manly West. On the night, Garry raised $216, for the Fragile X Association. It was a marvelous effort from Garry, who had just come out of hospital, after suffering illness from diabetes.

Over the few weeks leading up to Christmas Paul, Kate, Vince and I sold raffle tickets and FX Christmas cards at the Manly markets. In total we sold 185 packs of Christmas cards. With Christmas card sales, the FX raffle, the meat and fruit tray raffle organised by Garry Tom and Kate and Vince’s toy auction we raised a total of $2860.

Special thanks for helping to raise FX awareness goes to:

• The Peate Family – Janine and Greg for helping sell raffle tickets on the night and to their boys Pete (fx) and Geoffrey (fx) who drew the raffle for me, the boys did a wonderful job.
• Vince and Kate from the Ulysses – who helped us sell lots of Christmas cards and raffle tickets at the Manly markets and for organizing their toy auction.
• Barry Myatt Realty – who ran our FX colouring-in competition. Barry was also MC on the night of the Christmas carols, and did an amazing job.
• The Spring Parade Committee – who organise the carols and the spring parade. They are a very special, kind hearted group of individuals, who take time out of their busy schedules to organize fairly large community events. On the night of the Christmas carols, they plugged Fragile X like crazy!
• David – who runs the Manly Creative Markets at Manly Harbour Village
• Steve – Steve’s RC toy’s (from the Manly Creative Markets) donated a remote control Jet ski