Fragile X Trust
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Read more about Fragile X Trust:
The Fragile X Trust is a parent-led charitable trust that supports New Zealand families living with Fragile X Syndrome. It has three main aims:
- To raise awareness about Fragile X Syndrome within New Zealand;
- To assist people affected by Fragile X to achieve their full potential;
- To support families living with Fragile X and associated disorders.
Fragile X is considered a rare disorder because it only affects around one in 4000 individuals. But this still means that around one thousand New Zealand homes have a fragile X child or adult in their household. Fragile X causes developmental and learning delays and mild to severe intellectual disability. In fact it is the leading cause of inherited mental impairment. Fragile X is also associated with many behavioural problems and is one of the many causes for autism. About 6% of autistic people turn out to have fragile X and 50% of pre-school fragile children meet the diagnostic criteria for autism.
One in 260 women and one in 800 men are carriers for fragile X syndrome. This means they may be at risk of passing the disorder onto their children. New research shows that many carriers also suffer mild to moderate symptoms of the disorder. Adult carriers may also develop a Parkinson’s-like disorder called Fragile X-associated Tremor Ataxia Syndrome or FXTAS.
The Fragile X Trust:
- coordinates a national support network
- runs local workshops and national conferences
- maintains a library of useful books and audio-visual material
- maintains regular contact with a global network of families, researchers & clinicians who are working to understand, treat, manage and eventually find a cure for Fragile X.
Winning a donation from Sovereign will help us achieve:
Establish the first Fragile X clinic in New Zealand.
Even though there are well-established specialist therapies and treatments for this disorder, there are no specialist services for Fragile X Syndrome in New Zealand. The Fragile X Trust has initiated an education programme and with the assistance of specialists in the United States and Australia we are now working toward establishing a local treatment and intervention centre.
Our details:
| Registration No: | CC25998 |
| Region: | Hawke's Bay/East Coast, Waikato/Bay of Plenty/Rotorua, Manawatu/Wanganui/Kapiti, Northland, Taranaki, Wellington, Auckland, Central Auckland, South Auckland, North Auckland, West Auckland, East Auckland, Canterbury/South Canterbury, Southland, West Coast, Nelson/Marlborough |
| Category: | Children's disability support, Children's learning related disorders, Children's health - mental wellness and support for emotional trauma, Early childhood support and child shelter assistance, Parental advice and support, Children's health and rehabilitation, Teenage advice & support |
| Contact Person: | Andrea Lee (National Coordinator) |
| Address: | 196 Taita Drive, Lower Hutt |
| Telephone: | 0508-9380552 |
| Email: | info@fragilex.org.nz |
| Website: | www.fragilex.org.nz |
| No. helped nationally: | 200-1000 |
| No. helped per project: | 50-200 |
| Existing sponsors or funders: | JR McKenzie Trust NZ Lottery Grants Board The Southern Trust The Canterbury Community Trust Pelorus Trust NZ Organisation for Rare Disorders |
