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Kiwi-born US expert to share knowledge of disorder

PRESS RELEASE for 25 October 2005

Kiwi-born US expert returns home to share knowledge of genetic disorder

In early November, Louise Gane returns to Wellington to participate in her second local workshop on fragile X syndrome, a genetic disorder that affects around one in 4000 individuals.

Fragile X is the leading genetic cause of mental impairment and autism and is characterised by global learning delays, delayed speech and many behavioural problems. About one in 250 women carries the gene mutation on her X chromosome and has the potential to pass the syndrome on to her children. The syndrome takes it name from the appearance of the X chromosome, the gene mutation causing one end of the chromosome to look like it is close to falling off.

Previously thought to be asymptomatic, it is now known that 20 percent of carriers will suffer premature ovarian failure and carriers may also develop a Parkinson's-like neurological disorder called FXTAS.

There is no national register for fragile X but, based on the numbers known to the New Zealand support network, the disorder appears to be greatly under-diagnosed in New Zealand, and particularly so among Maori and Pacific Island families.

Louise Gane is a New Zealand-born, US-trained genetic counsellor who has specialised in counselling families affected by fragile X syndrome for the last 20 years. For the last 10 years she has been based at the MIND Institute, University of California at Davis, which is the leading international centre for treatment and research into fragile X and associated disorders.

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In the last month, Louise's team has secured a US$1.25 million grant to develop new protocols for genetic counselling and genetic testing for fragile X and associated disorders - a topic close to the heart of many New Zealand families who feel local genetic counselling services focus too much on individual autonomy rather than supporting a family-based decision making processes. This topic was aired at the Wellington fragile X workshop last year, which focused on the issues surrounding genetic testing.

This year's workshop will focus on treatment strategies, especially in relation to learning and socialisation. Louise Gane teams up with Christchurch-based speech and language therapist, Alison Schroeder, author of "Socially Speaking" and "Time to Talk" - social skills and language development programmes for 4-10 year olds.

Fragile: Handle with Care - a workshop on early intervention, education and social skills strategies for children with fragile X syndrome and related disorders on the autistic spectrum - will be held at Avalon Baptist Church Hall, 774 High St, Lower Hutt, on Friday November 4, 1.00-5.30 pm. To register for the workshop or find out more about fragile X, contact Chris Hollis, Wellington Fragile X Support Group coordinator, Tel: 04-938-0552, Email: fxwell@paradise.net.nz. See also: www.fragilex.org.nz or www.nfxf.org


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