FREE ONE DAY SEMINAR

Shepparton

Friday 1st April 2011

Fragile X Syndrome

The Fragile X Association 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 Shepparton Seminar Flyer for more details and the booking form.

Our Association supports the introduction of  the National Disability Insurance Scheme and the scheme’s “Every Australian Counts” campaign. The NDIS is a proposed system to change the way services for people with disabilities, their families and carers, are funded and structured; to provide them with the regular care, support, therapy and equipment they need.

The NDIS recognizes the high rates of physical, emotional and financial distress amongst many families. It  will allow people to make choices about the kinds of things that will best meet their particular needs.  The NDIS includes support provisions for children and adults including early intervention, home and family life, education and work.

Rallies in support of the NDIS are taking place all round the country. Please see the news page of the NDIS site for further information.

The scheme is the key recommendation to come from the Disability Investment Group which was set up by the government in April 2008.

What you can do to help the campaign for the introduction of NDIS

• Sign the petition
• Follow Every Australian Counts on Facebook and invite your friends to follow
• Follow Every Australian on Twitter and retweet their messages
• Take part in rallies

More Information

• Every Australian Counts
• Establishing a New National Disability Insurance Scheme on the FaHCSIA site.

Fragile X Family & Friends Fun Day

Sunday November 7th 12 mid-day

At: Werribee Park, Enter at Gate 2 near Victorian State Rose Garden. There are BBQ, & rotundas located there.

What to Bring: A picnic rug, some food for yourself & family. A sausage sizzle will be provided.

Things to Do: Chat, play a game of cricket or Frisbee, share a sausage and a joke. There is a free guided tour of the mansion at 2pm for those interested. (You cannot pre book but if you book when you first get to the mansion you should be fine as the tour is for 25 people).

RSVP:  To Sarah Jones by November 5th 2010
Email: sarahvjones@bigpond.com or call 0428 204 449.

How to get there: Get to Werribee Park on the Princes Freeway (M1) from Melbourne en route to Geelong, Great Ocean Road and Twelve Apostles. Take the Duncans Road turn off from the Princes Freeway (M1) and enter at Gate 2.

Public Transport: A bus service runs from Flinders Street Railway Station to Werribee station on Sunday. For information on public transport services, visit Metlink on www.metlinkmelbourne.com.au

Werribee Park Shuttle Service: The Werribee Park Shuttle Service operates daily return trips from the Victorian Arts Center to Werribee Park. For further information and bookings phone (03) 9748 5094 or see www.werribeeparkshuttle.com.au

Park Information including map: http://www.parkweb.vic.gov.au/resources05/05_1224.pdf

Looking forward to seeing you there!

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 [download id="28"]

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.

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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