• 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

Growing up with Fragile X Syndrome: The road to Marty Campbell is the new novel from Dr Robyn Iredale. Dr Iredale has a family history of fragile X syndrome that was first discovered when her son Marty was seven years old. She has lived through the ramifications of fragile X by being a carrier herself and passing on the syndrome to two of her children, through two brothers and two daughters of one of her brothers. This 50 year experience of fragile X makes her eminently competent to describe its intricate affects.

To be launched on the 29th October 2011 by Paolo Totaro, this is an essential read for all those affected or interested by the sydnrome. For more information on the book or how to purchase a copy please visit http://www.vividpublishing.com.au/fragilex.

‘This book provides a most personal insight into the many challenges of bringing up a young man with fragile X and also a message of hope for all parents and professionals involved with the syndrome. I urge you to read it.’  - John Kelleher, President, Fragile X Association Australia.

‘For anyone living with a child affected by fragile X, The Road to Marty Campbell is an essential read explaining this genetic condition and how, through love and support, independence can be achieved.’ – Dr Michael Field, Director of GOLD.

Download the Flyer

This year the actual Fragile X Awareness Day on Juy 22nd is on a Friday which makes it perfect for morning teas, casual workdays and lunches. We encourage you and your work or social community to celebrate and recognise this day at a grass roots level in a casual and friendly fashion to be the host of an occasion like this.  Once again we have posters and brochures, pens and ribbons which we can supply for your fundraising so please contact us if you would like any of these items as well as the guidelines and an authority to fundraise.

Last year we had tremendous publicity with coverage on national television as well as many local media. To view this coverage  click here.

We have invited the leading fragile X researchers and medical professionals in Australia to attend the Fragile X Research Symposium.  The symposium is aimed at fragile X researchers and medical professionals.
Here is a sample of the speakers and topics  they will cover:

• Dr Randi Hagerman, Medical Director of the MIND Institute, UC Davis.USA. – Overview of Treatment Approaches
• Professor Kim Cornish, Head of School of Psychology, Monash University – Fragile X phenotypes: premutation carriers and overview of current phenotyping studies.
• Professor Laurie Brown, NATSEM, University of Canberra – Health economics costing: modelling for service planning and interventions.
• Professor Tim Turpin, Sociologist, University of Western Sydney and
• Professor Robyn Iredale, ANU – Family needs assessment from FXAA 2009 surveyDifferent Methods of Screening: speakers to be confirmed – Including Newborn Screening,   Pre-pregnancy population screening, and Technology for Screening.A representative from the UNSW will discuss their study on male premutation carriers and FXTAS.

The Association is very pleased to welcome Dr Randi Hagerman. Dr Hagerman, M.D. is a Developmental and Behavioral Paediatrician and the Medical Director of the M.I.N.D. Institute at UC Davis to the Fragile X Research Symposium. She co-founded the National Fragile X Foundation in 1984 in Colorado and developed a world-renowned Fragile X research and treatment centre.  In 2000, she moved to UC Davis to be the Medical Director of the M.I.N.D. Institute. Dr. Hagerman and her team discovered FXTAS, a neurological disorder that affects older carriers of Fragile X. She is currently focused on targeted treatments for children and adults with Fragile X syndrome and autism and sees many families affected by Fragile X syndrome and also those affected by Fragile X Tremor/Ataxia Syndrome (FXTAS) and primary ovarian insufficiency (POI).  At the symposium, Dr Hagerman will give an overview of treatment approaches.

Dr Helen Heussler, Developmental Paediatrician, Mater Hospital, Brisbane, will chair a panel discussion on “Clinical Care from a Clinician’s perspective” with other prominent Australian fragile X medical professionals.  This involves a presentation by each of the medical practitioners and a discussion on what they see as the major research priorities for the future.

The day will finish with a discussion on “The Way Ahead” which will review the future of fragile X research in Australia and the best way that researchers and the medical professionals should work together to achieve the best outcome.

FragileX Research Symposium Brisbane – Agenda

To register for the Symposium please click Research Symposium Registration.

We would like to thank the Mater Medical Research Institute for providing the venue for the Fragile X Research Symposium and Novartis for their generous support of the Symposium.

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 seminar is open to health professionals, educators and families and carers of people affected with Fragile X syndrome.  The Better Start Initiative begins on July 1st so take the opportunity to learn more about fragile X.

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.

For more details please download the Townsville Seminar Flyer, which includes the booking form, and the Draft Agenda.

The Fragile X Association would like to thank Newman’s Own for their funding of this seminar.

Canberra

Friday 15th April 2011

Fragile X Syndrome

Fragile X Association of Australia have arranged for the Fragile X clinic team from the Children’s Hospital at Westmead to present an overview of Fragile X Syndrome for Health Professionals, Educators and Families.  Update yourself on the latest information on this important cause of developmental disabilities, ADHD and ASD.

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 Canberra Seminar Flyer and a draft agenda for more details and the booking form.

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.

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!

• 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.

Free One Day Workshop

Adelaide

Friday 23rd April 2010

Fragile X Syndrome

The Fragile X Association, through funding from the Fred Archer Charitable Trust managed by Trust Company Ltd, 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 Adelaide Seminar flyer for more information and to register.