Highlights

• From November 6th to November 14th the Fragile X Association is having a series of Fragile X seminars and family
  forums with Professor Randi Hagerman and Louise Gane from the M.I.N.D. (Medical Investigation of Neurodevelopmental
  Disorders) Institute in UC Davis in America. Seminar Registration Form
• Fragile X Christmas Cards 2009 on sale
• Profile – Professor Kim Cornish – Fragile X researcher and Professor of Psychology at Monash University in Melbourne.
• National Fragile X Survey Extended – If you haven’t had time to complete the survey on line we have now extended
  the survey until the end of October.
• Article – Fragile X syndrome and reproductive genetics in the 21st century by Dr Ken Maclean Clinical Geneticist
• Article – Kids are still Kids by Azma Hoskins
• Committee member Doug Rogers is  Mosman Daily’s Father of the Year and one of 20 finalists for the NSW Community Father of the Year.
• Review of Fragile X Awareness Day
• News from the state support groups.

Read online or download and save: fx info Spring 2009

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.

Good luck to all those who are raising funds for Fragile X Association Australia in the Sydney City2Surf which takes place this Sunday, August 9th.  Participants will be either walking, running or jogging the 14 km from Hyde Park to Bondi Beach. Thank you all for your fundraising efforts; with $3545 pledged to date.  It is not too late to donate. You are able to either donate through Everyday Hero – to one of the individuals listed below or directly via our Association page

Reasons that Raising Awareness of Fragile X Syndrome is Important?

• It is estimated that one child is born in Australia every week with Fragile X Syndrome and in that same week, 12 babies will be born who are carriers. One in 3800 males and 1 in 4000 females are affected by the condition.
• Although Fragile X has been found in all parts of the world it is thought that the majority are yet to be diagnosed. Around 30% of children with Fragile X have some degree of autism and between 2-6% of those diagnosed with autism have Fragile X Syndrome.
• Because of the prevalence of this genetic disorder it is vital that all are aware of its existence. Appropriate therapy and medical treatment may not be given to those without the correct diagnosis.
• Most people have heard of Down Syndrome and, even though Fragile X is is second only to Down Syndrome as the cause of mental impairment, Fragile X syndrome is not widely known.
• It is now thought that as many as 1 in 130 women and 1 in 800 males are carriers of Fragile X. A carrier mother has 50% chance of passing the mutation to her children, male and female. These children may be premutation carriers or be affected by Fragile X . All daughters of male carriers will be carriers themselves.

Apart from the implications for their children, carrier males and females may have their own distinct health issues.

• Female carriers may experience Primary Ovarian Insufficiency with involves early menopause, have a higher risk of osteoporosis, and clinical depression.
• Male carriers, especially those over 50, can suffer from a progressive neurological condition called FXTAS which can mistakenly be diagnosed as Alzheimer’s or Parkinson’s disease.

Our Association has been busy all year promoting awareness and education with conferences, talks, producing brochures and literature. For Awareness Day we have distributed yellow ribbons throughout Australia. Our members continue to work hard giving talks, newspaper and magazine interviews and fundraising. Most parents of children affected by Fragile X will have had to educate teachers, therapists, their families and even medical specialists.

Awareness Day Events

Australia

• New Fragile X Association of Australia brochure explaining Fragile X – “Fragile What?” Please feel free to download a copy.
• Our members are wearing their Fragile X T shirts (at least in the parts of Australia where it is warm enough for them to be seen!)
• Margaret is holding an awareness stall in Taree today, the 22nd July.
• Sharon in Mittagong is running a Bunnings BBQ on Saturday, the 25th July.
• The Victorian support group held an awareness stall at Southland Shopping Centre on Sunday 19th July.
• Awareness Day Ribbon Sales

USA

The National Institute for Health will be conducting a Congressional Briefing on National Fragile X Awareness Day in Washington today.
The briefing, held in conjunction with the Centers for Disease Control and Prevention (CDC) will be outlining a comprehensive plan shaping future research into Fragile X Syndrome and associated disorders.

The NFXF say that Fragile X Syndrome (FXS) research is moving closer to finding a cure with the recent National Institutes of Health approval of this plan which was created by a group of leading scientists, parents and advocates. Recommendations range from basic research to applied policy research. Objectives include studying educational and behavioral interventions, evaluating family support systems, identifying risk factors, and looking at molecular and biological systems. For more information please see the NFXF press release

The FRAXA Reseach Foundatioin is holding a Fragile X Awareness Day Photo Contest FRAXA.org. You can vote daily for your favorite photo until 15th September.

My.Fragile X Community Site is also running a Photo Contest and are asking for photos of those promoting Fragile X awarness in their communities. Here is a slideshow of the entries to date:

Please help us raise awareness

Helping raise awareness can be as simple as mentioning to a friend, work colleague or family member that today is Fragile X Awareness Day. If you want to refer them to details you can send them along to this site or to the Fragile X Organisation in your own country.

If you are a member of any social networking sites such as Twitter (#fxawareness) or Facebook please help publicize the day by linking to this post or to other Fragile X sites.

  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.

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 [download id="10"]

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