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 Note: There is a file embedded within this post, please visit this post to download the file.

Note: There is a file embedded within this post, please visit this post to download the file. – PDF File

Free One Day Workshop

Adelaide

Friday 23rd April 2010

Fragile X Syndrome

The Fragile X Association, through funding from the Fred Archer Charitable Trust managed by Trust Company Ltd, have organised for the Fragile X Alliance team, led by Dr Jonathan Cohen, to provide an overview of Fragile  X syndrome.  This free workshop is open to health professionals, educators and families and carers of people affected with Fragile X syndrome.

All speakers are recognised experts in their field and will cover a wide range of management strategies relevant to developmental disabilities and autism spectrum disorders.

If you are interested please download the Adelaide Seminar Note: There is a file embedded within this post, please visit this post to download the file. flyer for more information and to register.

• $30,000 grant from The Fred Archer Charitable Trust managed by Trust Company Ltd for mobile Fragile X syndrome workshops. The next mobile workshops to be held with the Fragile X Alliance clinic in Hobart on March 12 and in Adelaide on 23rd April.
• Newborn Screening for Fragile X syndrome.
• Fragile X Update seminars reviewed. The seminars featuring Professor Randi Hagerman and Louise Gane, MSc were held in Melbourne, Sydney and Brisbane in November.
• Committee Focus. Highlighting some of the achievements of the Committee in 2009.
• News from the state support groups.

Read the full newsletter: Note: There is a file embedded within this post, please visit this post to download the file.

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

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Download the seminar registration form for more information.

Seminar Registration Form

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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.

The brochure gives an overview of the topics:

• What is Fragile X Syndrome?
• What Causes Fragile X Syndrome
• How is Fragile X Syndrome Inherited
• Why Should I be Tested?
• Treatment
• Autism and Fragile X Fragile X-associated Tremor/Ataxia Syndrome (FXTAS)
• Early Menopause or Primary Ovarian Insufficiency (POI)
• Behavioural Characteristics
• Intelligence
• Speech and Language
• Physical Characteristics
• Positive Aspects of People with Fragile X Syndrome
• The Fragile X Association of Australia

Please contact the Fragile X Association of Australia if you would like copies of the brochure to give to your GP, school, or office.  

  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.