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Congratulations! It’s Fragile X!

The third national conference on Fragile X Syndrome

The Little Theatre, 2 Queens Drive, Lower Hutt
WELLINGTON
2–3 November, 2009

Congratulations it’s Fragile X Syndrome! There may still be no cure, but there is now a wealth of knowledge on the detection and treatment of Fragile X and associated disorders. This knowledge provides families, educators and health professionals with treatments and strategies to help the affected individuals in their care to achieve their full potential. Our two keynote speakers – Randi Hagerman and Marcia Braden – are in the centre of this new vision for Fragile X. This conference is a celebration that will span extraordinary new developments in genetic testing and screening, huge advances in medical treatments and the global and local initiatives being used to provide specialised care and education for Fragile X children.

Speakers

Randi Hagerman MD is medical director of the MIND Institute and professor with an endowed chair in fragile X research at the University of California at Davis. Randi has over 25 years of experience in the field of neurodevelopmental disorders, particularly fragile X and autism. Her research focuses on the correlation between an individual's genetic make-up and their physical and behavioural characteristics.

Marcia Braden PhD is a psychologist with a clinical practice in Colorado specialising in children and adolescents with fragile X, autism, Asperger’s syndrome, ADHD and related disorders. A former teacher with experience teaching general and special education, Marcia is a leading international authority on behaviour management and education strategies for children with fragile X. Her 1997 book “Fragile: Handle with Care” is an indispensable guide to bringing up children with fragile X.

Louise Gane MS is senior genetic associate at the MIND Institute. She has over 25 years experience with fragile X, beginning as a student at University of Colorado, followed by 10 years working as genetic counsellor at the Fragile X Treatment and Research Centre at the Children’s Hospital in Denver.

Jonathan Cohen MBBS, FRACGP, MFM, FACTM is a parent of a child with fragile X and a medical practitioner in Melbourne. He is a senior lecturer with the Centre for Developmental Disability Health Victoria, Monash University, and is the medical director of the Fragile X Clinic in Melbourne.

Beverly Sher BA (SP&H), ATCL, LTCL is a speech pathologist and a drama teacher. She uses drama extensively in her therapy and has found it to be an especially useful tool within the fields of pragmatic disorders and social skill training. Bev also coordinates the Fragile X Clinic in Melbourne.

Anita Nicholls BSc, DipECE is an early intervention teacher, the parent of two boys with Fragile X and the chairperson of the Fragile X Trust.

Programme

Click on the links in the table to view the presentations in pdf format.

Monday 2 November
8.00 am Registration
8.30 Welcome
8.40 Introduction to Fragile X Randi Hagerman
10.10 Ministerial address Tariana Turia, Assoc. Minister of Health, Minister of Disability Issues
10.30 Morning Tea
11.00 New Zealand clinical networks John Forman, Exec. Director, NZ Organization for Rare Disorders
11.20 New approaches to treatment Randi Hagerman
12.30 pm Lunch (not provided)
1.30 Australian perspectives Jonathan Cohen
2.15 Supporting families Louise Gane
3.00 Afternoon tea
4.00 Females with fragile X Jonathan Cohen
5.30 Wrap-up
6.00 Fragile X Trust AGM
7.00 pm Conference Dinner
Tuesday 3 November
8.30 am New approaches to education Marcia Braden
10.00 Parent’s perspective Anita Nicholls, Chairperson, Fragile X Trust (NZ)
10.30 Break
11.00 Speech language therapy Beverly Sher
12.30 pm Lunch (not provided)
1.30 Inclusive education Kerry Howard, Teacher, Central Normal School, Palmerston North
2.00 Transition to school Marcia Braden
3.30 Break
4.00 Transition to adulthood Marcia Braden
5.00 pm Wrap-up
 

Hosted by the Fragile X Trust (NZ) with sponsorship from the JR McKenzie Trust and NZ Lotteries

Contact us: 0508 938 0552 or fragilex.info@nzord.org.nz or 196 Taita Dr, Lower Hutt 5011