Hunter and Lucy get a Better Start

Candy and Hunter Every week in Australia one child is born with Fragile X and 20 children are born who are carriers with the potential to pass to later generations.

Lucy and Hunter are two of those children who are fully affected. Read their story here:

Hunter and Lucy get a Better Start

Their Mum, Candice, had heard about the Government’s Better Start for Children with Disability (Better Start) program through the Fragile X Association of Australia.

Better Start provides eligible children with up to $12,000 in funding for early intervention services like speech pathology, occupational therapy and psychology

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new: fx info newsletter Summer edition

fx info_Summer 2014_Feb 2014_email and webfx info_Summer 2014_Feb 2014_final_print version_Page_01

 

 

 

 

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Bridge to Beach Golf in the City prize

Another great prize for our raffle at Manly Wharf Bridge to Beach this Sunday (if you are in Sydney come on down!) a voucher for 4 people to come in and play for an hour on one of their Golf Simulators.
You can play St Andrews, Pebble Beach or many other famous courses from around the world. from http://www.golfinthecity.com.au/

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Challenges & strengths of the Fragile X child in school

The Fragile X Child in School booklet

A range of resources is available to assist kindy, primary and high school teachers help children with Fragile X Syndrome reach their full educational potential.
Including:

The Fragile X Child in School
 This short booklet was produced by St Catherine’s School in Melbourne and Monash University, with Fragile X Association of Australia.  It touches on speech & language, executive function, teaching maths, and classroom strategies.
Available in print or soft copy:  support@fragilex.org.au OR call 1300 394 636

 Fragile X Syndrome – for Educators
This is a 12-page article written by Professor Kim Cornish, from Monash University, and Dr Mike Field, formerly of Monash University and the GOLD Service.  This includes more detail on the topics covered in “The Fragile X Child at School” booklet.
Available in print or soft copy:  support@fragilex.org.au OR call 1300 394 636

Lesson Planning Guide for Students with Fragile X Syndrome.
This very comprehensive 198-page guide is produced by the US National Fragile X Foundation.
It covers key developmental challenges at the primary, middle and high school levels, a case study on adapting the classroom environment, and specific chapters on subjects including English, maths, communication/living skills. 
Soft copy available from on National Fragile X Foundation website  Family Tool Kits / Back to School page:

http://www.fragilex.org/treatment-intervention/education/lesson-planning-guide/

Or contact us on: support@fragilex.org.au or  1300 394 636

 

 

 

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Fantastic Prizes for best fundraisers Manly Wharf Bridge to Beach Paddle race

Individual Prizes: For the person who raises the most for FXAA as individuals by 23/02/2014

  1. Sail on Team Australia on Sydney Harbour for 2 people with champagne and nibbles. (Team Australia is a giant 60ft ORMA trimaran and one of the fastest boats in the Southern Hemisphere owned by successful businessman and experienced yachtsman, Sean Langman, a 23-time Sydney to Hobart veteran)
  2. 2 nights at Scotland Island Lodge, dinner, bed and breakfast for two. (Scotland Island Lodge is a beautiful architect designed private residence quietly tucked away on the North Eastern side of the island in the heart of Pittwater only accessible by water. The Lodge opened late in 2002 as a boutique guest house and over the years it has become renowned for its great hospitality and excellent cuisine).

Group Prizes: For the team who collectively raise the most for FXAA by 23/02/2014

  1. Day Sail on Pittwater with champagne and hamper for 8 people (On Weekend Option, a Beautiful, Sun Odyssey 44 footer, skippered by renowned sailor Stuart Veitch)
  2. Restaurant voucher for Hugo’s restaurant at Manly Wharf

Enter at Oceanpaddler.com

NB: sailing prizes and restaurant vouchers available in 2014, dates to be advised.

If you would like to volunteer to help on the day please let us know on 02 9977 0074 or email us at support@fragilex.org.au

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Luke is paddling for Fragile X

Bridge to Beach

Bridge to Beach

If you can’t take part in our fundraising challenge how about championing someone who has already started the journey? Maybe you could ask your family and friends to sponsor Luke who is taking part in the Bridge to Beach for Fragile X?

http://www.mycause.com.au/page/bdremedialbuildingandwaterproofing

Stand up Paddleboarding is Luke Ratcliff’s latest sport. He is also a sailor (18 footers, 11-time Sydney to Hobart Race competitor including overall winner in 2003) and kiteboarder.

Luke has agreed to support Oceanpaddler’s race on account of his close association with Fragile X Syndrome. Luke married into a family where FXS can be traced back five generations, but was not diagnosed till 1979. His wife is a carrier and this meant difficult times waiting for test results on their three children.

Luke is committed to improving the diagnosis and care of those with FXS. He feels fortunate to enjoy the social and competitive side of the sport and was the person who suggested the linkup between the FX Association Australia and Oceanpaddler, as a way of creating awareness of the syndrome. For this we are extremely grateful.

 

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New school? New classmates? Fragile X info to share

Fragile What brochure cover pdf 1035-FragileX-DVD-Cover pic

Is your child starting at a new kindy, or new school? With new classmates and new teachers?

Our Fragile What?” leaflet is one way to introduce Fragile X to other parents and kids, and help them understand a little about your child. 

One of our Fragile X Association members, for example, says she plans to pop copies of  the Fragile What?  leaflet into pigeonholes at her son’s new kindy very early on, as a conversation starter and way to communicate with the other parents about Fragile X. 

And our DVD “Understanding Fragile X” is ideal for new carers, teachers or other new helpers in your life.

Fragile What? and Understanding Fragile X are available now.  Get in touch with us if you’d like copies:

  • Message via our facebook page: https://www.facebook.com/fxAus 
  • Call 1300 394 636, or
  • Email support@fragilex.org.au
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Bumper stickers: I Love Someone with Fragile X

Raise awareness of Fragile X while you’re on the road!

Our new bumper stickers are free.

Send us an email with your name and postal address if you’d like to receive a couple of bumper stickers:   support@fragilex.org.au

I Love Someone with Fragile X Bumper Sticker

 

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Fundraising Challenge!

Calling all Paddlers! Your Fundraising Challenge……

Sydney Harbour! Is there a better place in the world to take on a fundraising challenge?

Take part in an exciting paddle race on Sunday 23rd Feb and help us raise much needed funds for families affected by Fragile X, the most common known cause of intellectual disability and single gene cause of Autism.

Compete as an individual or put together a team.

Start Fundraising NOW and you could WIN some great PRIZES.

It’s easy to do. Simply sign up to My Cause, enter your fundraising target, tell all your friends and get started

http://www.mycause.com.au/events/bridgetobeach2014forfragilex

Please share with your friends

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Bridge to Beach 2014 for Fragile X

Sunday 23 February 2014.  

The Annual Bridge to Beach is one of Australia’s largest open water paddling events and is regarded as one of the most spectacular in the world.

Oceanpaddler have teamed up with the Fragile X Association of Australia to help raise awareness and much needed funds for families affected by Fragile X

http://www.mycause.com.au/events/bridgetobeach2014forfragilex

Participants marshal at Blues Point Reserve for a spectacular sunrise over Sydney Harbour before lining up directly underneath the Sydney Harbour Bridge where the start line is situated. Compete as an individual or put together a team. Start Fundraising NOW and if you raise a minimum of $100 you could WIN some great PRIZES for best fundraisers in each category.

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