Fragile X Association of Australia » Newsletters http://www.fragilex.org.au Information and news on Fragile X Syndrome and disability Australia Wed, 25 Jan 2012 01:48:18 +0000 en hourly 1 http://wordpress.org/?v=3.3.1 fx-info Newsletter Summer 2011 http://www.fragilex.org.au/2012/fx-info-newsletter-summer-2011/ http://www.fragilex.org.au/2012/fx-info-newsletter-summer-2011/#comments Mon, 09 Jan 2012 17:44:15 +0000 Sue Bride http://www.fragilex.org.au/?p=2398 Read the Full Newsletter: fx info Newsletter Summer 2011 ]]> http://www.fragilex.org.au/2012/fx-info-newsletter-summer-2011/feed/ 0 fx-info Newsletter Spring 2011 http://www.fragilex.org.au/2011/fx-info-newsletter-spring-2011/ http://www.fragilex.org.au/2011/fx-info-newsletter-spring-2011/#comments Wed, 19 Oct 2011 23:19:20 +0000 Sue Bride http://www.fragilex.org.au/?p=2347
Read the Full Newsletter: fx info Newsletter Spring 2011

Highlights

  • Farewell to our Office Manager, Jocelyn Selwood and Dominica Kazan, Case Worker.
  • Welcome and Introductions to:
    - Our new staff: Linda Blair (Office Manager), Joan MacDonald (Case Worker/Administration) and Margot Stolle (Communications Officer)
    - Our new board members: Greg Peate and Simone Zaia
  • Research Particpants needed for:
    - FXTAS Study: the effects of the “premutation” of the Fragile X gene in older men
    - Step Ahead Project – An Australian Study of families who carry the Fragile X gene – carrier participants required.
    - Study: “Attention and activity profiles in children with different developmental disabilities”.
  • New Book by board member, Robyn Iredale,  “Growing up with Fragile X  Syndrome: The Road to Marty Campbell” about her son’s journey with Fragile X Syndrome.
  • FXAA Achievement  and Merit Awards 2011
  • Member’s Story: Janine Peate
  • 2011 Awareness Campaign
  • Workshops
  • State news
]]> http://www.fragilex.org.au/2011/fx-info-newsletter-spring-2011/feed/ 0 fx-info Newsletter Winter 2011 http://www.fragilex.org.au/2011/fx-info-newsletter-winter-2011/ http://www.fragilex.org.au/2011/fx-info-newsletter-winter-2011/#comments Wed, 08 Jun 2011 04:27:10 +0000 Sue Bride http://www.fragilex.org.au/?p=2204
Read the Full Newsletter: fx info Newsletter Autumn 2011

 

Highlights

  • Our office move
  • FXAA Research Symposium
  • Better Start Initiative
  • Carrier Research
  • FX Clinic and Workshop
  • Upcoming workshops, information sessions
  • Member’s stories
  • State news and events
]]> http://www.fragilex.org.au/2011/fx-info-newsletter-winter-2011/feed/ 0 fx info Newsletter Autumn 2011 http://www.fragilex.org.au/2011/fx-info-newsletter-autumn-2011/ http://www.fragilex.org.au/2011/fx-info-newsletter-autumn-2011/#comments Sun, 20 Mar 2011 19:18:53 +0000 Sue Bride http://www.fragilex.org.au/?p=2012
Read the Full Newsletter: fx info Newsletter Autumn 2011
 

Highlights

  • From April the office hours will be extended to Monday to: Friday 9am to 4pm
  • Introducing our new team members:
    - John O‘Connor, Executive Director
    - Social worker, Jane Davidson
    - Liz Howarth, family support representative in
    Canberra
  • Novartis Fragile X Clinical Trial of AFQ056 in Australia
  • Meeting with Senator the Honourable Jan McLucas, Federal Parliamentary Secretary for Disabilities and Carers
  • Information on:
    - National Disability Insurance Scheme
    - Federal Government‘s “Better Start Initiative”
    - Sydney IVF – PGD Assistance Program
    - Productivity Commission’s
    “Disability Care and Support” draft report
  • NSW Respite Camps
  • Member’s stories
  • State news and events
]]> http://www.fragilex.org.au/2011/fx-info-newsletter-autumn-2011/feed/ 0 fx info Newsletter Summer 2010 http://www.fragilex.org.au/2010/fx-info-newsletter-summer-2010/ http://www.fragilex.org.au/2010/fx-info-newsletter-summer-2010/#comments Thu, 09 Dec 2010 18:07:31 +0000 Sue Bride http://www.fragilex.org.au/?p=1895
Read the Full Newsletter:

Highlights

  • Will Delaat, chair of Medicines Australia and FXAA board member,addresses the National Press Club
  • “Letter from the President”, John Kelleher
  • Letter from the new Parliamentary Secretary for Disabilities and Carers to FXAA explaining the new services available to people
    with fragile X syndrome.
  • FX Raffle details
  • Workshops and Clinics Update
  • Grant from Newman’s Own Foundation (with upcoming presentation on TV’s “A Current Affair”) and the
  • Grant from Brenda Best Charitable Trust
  • Success in Application for PhD Scholarship, 2011-2013
  • FXTAS: A New Study May Shed Light on the Syndrome in Older Men
  • Fragile X and Neurogenetics Research in Melbourne, Australia.
  • What Have I Changed My Mind About? – Article by Marcia Braden, psychologist and special education consultant in Colorado Springs
  • Member’s Story:Don and Dorothy Roberts. Response from Professor Gillian Turner
  • Tim Dances at Disneyland
  • State Support News
]]> http://www.fragilex.org.au/2010/fx-info-newsletter-summer-2010/feed/ 0 fx info Newsletter Spring 2010 http://www.fragilex.org.au/2010/fx-info-newsletter-spring-2010/ http://www.fragilex.org.au/2010/fx-info-newsletter-spring-2010/#comments Sun, 19 Sep 2010 03:20:27 +0000 Sue Bride http://www.fragilex.org.au/?p=1728

Highlights

  • 2010 Christmas Cards Order Form
  • Fragile X Awareness Day 2010
  • Workshop/Clinic News
  • Australian and New Zealand Fragile X Family Survey Report
  • 2010 AGM Minutes
  • Minocyline preliminary study results
  • News from the States

Read the full newsletter: fx info Newsletter Spring 2010

]]> http://www.fragilex.org.au/2010/fx-info-newsletter-spring-2010/feed/ 0 fx info Newsletter Winter 2010 http://www.fragilex.org.au/2010/fx-info-winter-newsletter/ http://www.fragilex.org.au/2010/fx-info-winter-newsletter/#comments Wed, 16 Jun 2010 03:48:18 +0000 Jocelyn http://www.fragilex.org.au/?p=1569

Highlights

  • Emeritus Professor Grant Sutherland at our Fragile X seminar in Adelaide.
  • Australian and New Zealand Fragile X Family Survey(no.2).
  • Searching for a cure for James.
  • Fragile X testing.
  • Adelaide workshop and clinic
  • News from the States
  • Fragile X Awareness Day

Read the full newsletter: fx info Newsletter Winter 2010

]]> http://www.fragilex.org.au/2010/fx-info-winter-newsletter/feed/ 0 fx info Newsletter Autumn 2010 http://www.fragilex.org.au/2010/fx-info-newletter-autumn-2010/ http://www.fragilex.org.au/2010/fx-info-newletter-autumn-2010/#comments Wed, 07 Apr 2010 05:50:54 +0000 Sue Bride http://www.fragilex.org.au/?p=1530


Highlights

  • The Honourable Bill Shorten, the Parliamentary Secretary for Disabilities & Children’s Services meets with FXAA committee members.
  • The National Library’s PANDORA Archive include our FX INFO newsletter in their archives.
  • FX Carrier Support article.
  • Hobart Seminar report.
  • Australian and New Zealand Fragile X Family Survey
  • Article by Marcia Braden, PHD – ‘Reality Check’. Marcia discusses popular parenting advice in relation to children with Fragile X.
  • Funding Update
  • Strategy Day report
  • News from the States

Read the full newsletter:fx info Newsletter Autumn 2010

]]> http://www.fragilex.org.au/2010/fx-info-newletter-autumn-2010/feed/ 0 fx info Newsletter Summer 2009 http://www.fragilex.org.au/2009/fx-info-newsletter-summer-2009/ http://www.fragilex.org.au/2009/fx-info-newsletter-summer-2009/#comments Wed, 16 Dec 2009 01:11:33 +0000 Jocelyn http://www.fragilex.org.au/?p=1427 fx-info-09-12-summer


  • $30,000 grant from The Fred Archer Charitable Trust managed by Trust Company Ltd for mobile Fragile X syndrome workshops. The next mobile workshops to be held with the Fragile X Alliance clinic in Hobart on March 12 and in Adelaide on 23rd April.
  • Newborn Screening for Fragile X syndrome.
  • Fragile X Update seminars reviewed. The seminars featuring Professor Randi Hagerman and Louise Gane, MSc were held in Melbourne, Sydney and Brisbane in November.
  • Committee Focus. Highlighting some of the achievements of the Committee in 2009.
  • News from the state support groups.

Read the full newsletter: fx info Newsletter Summer 2009


]]> http://www.fragilex.org.au/2009/fx-info-newsletter-summer-2009/feed/ 0 fx info Newletter Spring 09 http://www.fragilex.org.au/2009/fx-info-newletter-spring-09/ http://www.fragilex.org.au/2009/fx-info-newletter-spring-09/#comments Fri, 02 Oct 2009 02:47:57 +0000 Sue Bride http://www.fragilex.org.au/?p=1360 Fragile X Association Newsletter

Highlights

  • From November 6th to November 14th the Fragile X Association is having a series of Fragile X seminars and family
    forums with Professor Randi Hagerman and Louise Gane from the M.I.N.D. (Medical Investigation of Neurodevelopmental
    Disorders) Institute in UC Davis in America. Seminar Registration Form
  • Fragile X Christmas Cards 2009 on sale
  • Profile – Professor Kim Cornish – Fragile X researcher and Professor of Psychology at Monash University in Melbourne.
  • National Fragile X Survey Extended – If you haven’t had time to complete the survey on line we have now extended
    the survey until the end of October.
  • Article – Fragile X syndrome and reproductive genetics in the 21st century by Dr Ken Maclean Clinical Geneticist
  • Article – Kids are still Kids by Azma Hoskins
  • Committee member Doug Rogers is  Mosman Daily’s Father of the Year and one of 20 finalists for the NSW Community Father of the Year.
  • Review of Fragile X Awareness Day
  • News from the state support groups.

Read online or download and save: fx info Spring 2009

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