Free One Day Workshop

Hobart

Friday 12th March 2010

Fragile X Syndrome

The Fragile X Association, through the sponsorship of 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 Hobart workshop flyer for more information and to register.

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.

In November 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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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