Fragile X Association of Australia

Torey Clarke is running the SMH marathon for FXS

fragilex — Thu, 16 May 2013 00:07:39 +0000

http://www.everydayhero.com.au/torey_clarke_2

Bruce Donald Radio Interview

fragilex — Tue, 14 May 2013 05:48:25 +0000

Bruce Donald (lawyer and FX parent) was interviewed on ABC Radio National on the RN drive slot on Friday evening http://www.abc.net.au/radionational/programs/drive/fragile-x-syndrome/4682724

Maternal Attitudes to Newborn Screening for Fragile X Syndrome

fragilex — Thu, 18 Apr 2013 04:58:26 +0000

new born screening research article

Ncle Morning herald mar 13

Monash University Study – Eye Movements and Attention to Gaze in Fragile X Syndrome

fragilex — Wed, 27 Mar 2013 23:34:45 +0000

Monash study FXS eye movements

Fragile X Newsletter Autumn 2013

fragilex — Wed, 27 Mar 2013 23:20:13 +0000

Autumn 2013 by email final

10 rules of behaviour

fragilex — Tue, 12 Mar 2013 23:35:10 +0000

http://www.fragilex.org/2013/treatment-and-intervention/is-your-childs-behavior a-manifestation-of-his-disability/

National Disability Insurance Scheme Rules Consultation Paper released

fragilex — Tue, 12 Mar 2013 22:22:23 +0000

http://www.fahcsia.gov.au/disability-and-carers/news/2013/national-disability-insurance-scheme-rules-consultation-paper-released

Clinic with Tracy Murman Stackhouse

fragilex — Tue, 12 Mar 2013 22:05:19 +0000

Tracy Murman Stackhouse is visiting Sydney and has offered to run a clinic for families on 30 April 2013.

Tracy is president and co-founder of the Developmental & Fragile X Resource Centre
(Developmental FX) in Colorado. She is a leading pediatric occupational therapist (OT) involved in clinical treatment, research, mentoring, and training regarding OT intervention people with FXS and autism. Tracy has a master’s degree in developmental psychology. Tracy has written several book chapters on sensory integration and neurodevelopmental disorders, and teaches nationally and internationally on sensory integration, fragile X and related topics. The consultation involves a half hour review of records, one hour with the client, a half hour parent feedback and brief written report with recommendations. Tracy can see children of all ages and adults.

The cost of the clinic is $350 per family. This fee will not be covered by Medicare.

Date 30 April 2013
Location Move About Kids Clinic
T1 Building, Unit 304
14 Lexington Drive
Bella Vista 2153
Interested families should contact Tracy directly for paperwork/to make arrangements. Tracy can be contacted by email tracy@developmentalfx.org

Understanding Fragile X – the new DVD

Margot — Tue, 03 Apr 2012 05:30:58 +0000

With the generous support of the St George Foundation and Genea – World Leaders in Fertility and the expertise of VIVA Communications, the Association has professionally produced a DVD titled Understanding Fragile X.

Running for just under 29 minutes it is a wonderful resource to help those affected, especially newly diagnosed families with young children, to understand the syndrome, its implications, what they can possibly expect in the future, and what help is available to them. It also informs and educates medical and education professionals on how best to facilitate the treatment of FXS and where to go for more information.

Thank you to those families who feature in the DVD and who share their stories and insights into life with Fragile X and to the medical and health professionals who provide valuable information and advice.

The DVD also includes a short 3D animation that provides a simple and consise representation of the genetics of Fragile X. To view both or either please click on the links below.

Click here to view the complete Understanding Fragile X DVD.

Click here to view the 3D animation.

LIVE LIFE MY WAY

Joan — Mon, 02 Apr 2012 23:56:30 +0000

NSW Government Person Centred Approaches LIVE LIFE MY WAY Launch of the final consultation stage

Tuesday 24 April, 2012, 10.00am to 3.15pm

Allphones (formerly Acer) Arena, Sydney Olympic Park, Homebush Bay

The NSW Government is holding this one day event to launch the final stage of the Living Life My Way consultation process. This launch will feature the public release of the discussion paper by the Minister for Disability Services and provide participants with an overview of the proposed approach to implementing person centred supports and individualised funding arrangements in NSW.

See below for more details:

http://www.cvent.com/events/nsw-government-stage-3-person-centred-approaches-launch-and-consultations/event-summary-e2c3cab8f8194888b95047ff504d8f4f.aspx