Teeing off for Fragile X*

*MEDIA RELEASE 20 April 2011:

Teeing off for Fragile X*

Thirty Wellington businesses and sports teams are participating in a Charity Golf tournament at Shandon Golf Club, Petone, on Wednesday 27th April. The aim is to help raise funds for a new treatment initiative for Fragile X Syndrome, a rare genetic disorder that affects around 4000 New Zealanders. The Hutt Valley based Fragile X Trust has teamed up with paediatrician Dr Andrew Marshall to offer clinical advice on treating children around the country via video conferencing. The six monthly clinical assessment and professional training sessions are an innovative approach, possibly the first in the world, for passing on specialist knowledge about this rare disorder to widely distributed families and health professionals throughout New Zealand. The first video-conferencing sessions for ten families were held in late March and were very well received by parents and paediatricians.

Fragile X Syndrome is an inherited disorder that affects neural pathways in the brain and results in varying degrees of development delay, intellectual disability, and behavioural problems. It is the leading known cause of autism. Great advances have been made in the treatment of the disorder in the last decade but because of New Zealand’s small population there have been no specialist clinics or services until now.

Dr Marshall has had a long-standing interest in Fragile X Syndrome. Following discussions with the Fragile X Trust, he and the Trust’s national coordinator Andrea Lee, travelled to the United States in 2010 to participate in the establishment of an international clinical network that will help to connect centres of Fragile X research and treatment with satellite programmes in countries like New Zealand.

With funds raised from this golf tournament, other health and special education professionals will have the opportunity to gain specialist knowledge in Fragile X and contribute to this new specialist treatment programme.

The tournament is being organised by Mark Sorenson, past captain of the New Zealand Men’s Softball Team, who has a child affected by Fragile X.
ends

© Scoop Media