Prime Minister Julia Gillard met with State and Territory leaders last Friday. While the COAG agenda was very crowded it was great to see the meeting did agree to broad principles to govern the development of the NDIS and released a progress report. You can find more details here.

Leader of the Opposition Tony Abbott also choose Friday to restate his bipartisan support for the NDIS . Mr Abbott said the NDIS “should be a new project that unites Australians: not one that is used by either side of politics to be critical of the other” and said he would support any funding commitments announced in this year’s Budget.

But as exciting as this news is, we are not there yet.

Friday’s events make it even more important that we make our voices heard at the national rally on Monday April 30.

All this talk is great – but we need action.

There is only two weeks to go – and we need everyone to be there to make sure our politicians understand we will not stop fighting until the NDIS is introduced for good.

Registrations to become a rally builder have closed, but it’s not too late to come along to the rally in your capital city.

Help spread the word about the rally by downloading posters, flyers and sign up sheets from our website, and encouraging others to join the movement and show their support on Monday 30 April.

Keep spreading the word and we will see you all on April 30.

The Every Australian Counts campaign team
www.everyaustraliancounts.com.au

P.S. Have you told a friend about the NDIS?

We need to make sure as many people as possible support the NDIS – tell a friend to join the movement today.

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.

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

Learn more about Fragile X syndrome and update yourself on the latest about this important cause of developmental disabilities, ADHD and ASD. The speakers are recognised experts in their field and will cover a wide range of management strategies relevant to developmental disabilities and autism spectrum disorders.

Perth Flyer

The publication of Dr Godler’s paper detailing these findings has sparked a flurry of media reporting about the testing, serving to increase the awareness of Fragile X in the community.

If you would like to read more, below is the media release from the Murdoch Children’s Institute as well as some of the resulting media.

The story was covered across Australia in both radio and print media  including stories in the Melbourne Herald Sun, Gympie Times, The Melbourne Age, ninenewsmsm.com.au, WA Today.com, Sky News.com.au, Newsmedical.net, bigpondnews.com, The Hobart Mercury.

Innovative test could revolutionise Fragile X screening and diagnosis

Gympie Times Thursday Jan 19 2012 – Aussie Fragile X Test

Herald Sun Thursday 19 Jan 2012 – Help_for_fragile_X_victims

The Age Thursday 19 Jan 2012 – Breakthrough_in_diagnosis_of_autism

Janie Roberts

The counselling service is free and is dependent on your  individual need so can either be offered on a one off basis or for the longer term.

Counselling – how may it help?

Sometimes people are reluctant to ‘burden’ their friends and relatives with their problems and can benefit from sharing them with a caring and empathic professional. This can reduce the sense of isolation, relieve some of the stress and strengthen the ability to cope. Families have also found it helpful to have an unbiased, gentle person to mediate in tricky areas or to assist in working out and facilitating family goals.

Most people feel at least slightly nervous when they initially attend a counselling session as they may not know what to expect. They may also feel that there is something really wrong with them in order to need counselling. This is not the case as we all need help at times and we also need to be understood and cherished in order to feel ok with ourselves. The counselling relationship offers this through unconditional, empathic and non-judgmental support. Counselling can be offered over the phone, via email or face to face in the Manly office. We are also able to visit individuals and families in their homes in the Sydney region.

What people have said about counselling sessions with Janie:

“I realised that I was talking to a professional, a person that I didn’t have to pretend to and someone who I didn’t feel guilty moaning and groaning to ….I am reminded of my skills and abilities and have a different outlook on life. My sincere thanks to Janie, not only for her professional input but also on the lovely manner in which she conducted our sessions. They were and are most valued.”
(N.W.)

“Janie assisted me with the fact that I was feeling like a failure and lost hope in my effectiveness as a carer and parent. She helped me address these issues and enlightened me about what she could see in me and the strength I had. I appreciated having someone to listen and understand my family and myself. She uplifted faith in myself and believed in me.”
(I.B.)

“Janie – What I appreciate about you:
Honest – owns up, real – admits her weaknesses, relates and settles me, likeable, easy to love, personable, has the ability to pour water on a fire, kindness, gentleness, vulnerability – an honest, carefree attitude, humble.”
(A. P.)

You can contact Janie on (02) 9977 0074, 1300 394 636 or  by email 

Download this article

• Financial Statements 30th June 2011
• Annual Report, Presidents Report 2010-2011

You can also find links to these and previous reports on our  Downloads Page.

• FragileX Research Symposium Brisbane – Agenda
• An examination of neuromotor and brain ‘signatures ‘ in FMR1 premutation carriers - Rachael Birch
• Novel Technology for Fragile X Population Screening – Dr David Godler, Dr Howard Slater, Dr David Amor, Dr Danuta Loesch

You can always find these and a range of other documents on our “Resources for Download” page

To be eligible to participate in the trial, patients must fit the following criteria:

• Be aged 12-17 in otherwise good general health.
• Have a previous diagnosis of Fragile X based on genetic testing (full mutation)
• Have a caregiver who spends on average at least 6 hours a day with the study participant and is willing to supervise treatment, attend all study visits and assist with study assessments
• Have a documented intellectual disability (IQ score less than 70)

The study lasts for a total of 20 weeks and includes a 3-week screening period, 16 weeks during which patients will receive study drug or placebo and a one week follow up. All patients will receive a placebo at some stage during the study.

If you would like more details on the trial, please contact Dr Natalie Silove at the Child Development Unit on 9845 2829.

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