Conference On Genetic Condition In Capital

MEDIA RELEASE

16 OCTOBER 2003

CONFERENCE ON GENETIC CONDITION DRAWS EXPERTS TO CAPITAL

Experts will gather in Wellington over Labour Weekend for a conference on a genetic condition that causes intellectual disability in hundreds of New Zealanders.

Fragile X Syndrome is the most common inherited cause of intellectual disability and affects an estimated 1300 New Zealanders, or one in 3000 individuals.

The second national Fragile X conference will discuss a range of issues including preventative care, and educational and behavioural issues.

Disability from Fragile X Syndrome ranges from mild speech and learning delays to extreme autistic behaviours and severe intellectual impairment.

Despite the syndrome being easily identified by a simple blood test, it is greatly under-diagnosed in New Zealand.

The result is that many New Zealand children and adults are missing out on specialist interventions and education programmes developed for the unique issues that affect Fragile X individuals.

Keynote speaker for the two-day conference is Marcia Braden, an internationally acclaimed expert on educational and psychological issues in Fragile X Syndrome and author of the popular book Fragile: Handle With Care.

Based in Colorado Springs, USA, Dr Braden specialises in early intervention and educational strategies for children with Fragile X and autistic spectrum disorders.

Her conference presentations will address the difficult issues faced by adolescents and adults with Fragile X, such as vocational training, sexuality and social interactions, and anxiety and aggression.

She will also discuss females with Fragile X, a group who have been neglected until recently.

Also speaking will be Jonathan Cohen, the medical director of the Fragile X Alliance Clinic in Melbourne, the only evaluation and treatment centre specifically focused on Fragile X in Australasia.

Dr Cohen is a strong advocate for screening for Fragile X prior to or in early stages of pregnancy. Given that the risk of being a carrier is one in 260, almost three times higher than for Down Syndrome, early testing provides women with clear choices in family planning.

Dr Cohen is also a parent of a child with Fragile X. His son, Michael, 16, will speak at the conference on his experiences at secondary school. Michael’s sister Anna, 14, who does not have the syndrome, will talk about living with a brother with Fragile X.

The conference will be attended by families affected by Fragile X and professionals working with Fragile X individuals throughout New Zealand.

The conference is to be held at the West Plaza Hotel and is organised by the Fragile X Trust (New Zealand). For more information of the Trust’s activities, contact Heather Copestake, 0800-15-1714 (fragilextrustnz@hotmail.com)

ENDS - see programme below

National Fragile X Conference 2003

West Plaza Hotel, 110-116 Wakefield St, Wellington

PROGRAMME (October 25-26)

Saturday 25 October

8.30 - 9.00 am Registration

9.00 - 9.15 am Introduction (Chairman of Fragile X Trust(NZ), Darryl Cockroft)

9.15 - 11.00 am Behaviour and Fragile X: from child to adult (Marcia Braden)

11.00 - 11.30 am Morning Tea

11.30 - 12.30 am Medications and preventative medical care (Jonathan Cohen)

12.30 - 1.00 pm Living with Fragile X (Michael and Anna Cohen)

1.00 - 1.45 pm Lunch

1.45 - 3.30 pm Educational issues and vocations (Marcia Braden)

3.30 - 4.00 pm Afternoon tea

4.00 - 5.00 pm Ongoing and reviewable resourcing schemes (ORRS) (HelenStevens and Pam Croxford)

5.00 - 6.00 pm Forum on Fragile X Trust, followed by conference dinner

Sunday 26 October

8.30 - 9.00 am Fragile X Trust AGM

9.00 - 10.30 am Females and Fragile X (Marcia Braden)

10.30 - 11.00 am Morning tea

11.00 - 12.00 pm Needs assessment and service coordination (NASC) (Louise Mitchell)

12.00 - 1.00 pm Adult living options (John Forman)

1.00 - 1.45 pm Lunch

1.45 - 2.30 pm Sexual development and Fragile X (Marcia Braden)

2.30 - 3.30 pm Panel questions and conclusion

Registrations: $40 for half day, $90 for whole day, $180 for both days

Contacts: Chris Hollis (c.hollis@gns.cri.nz)

Heather Copestake (fragilextrust@hotmail.com)

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