Acceptance in the community for those living with a rare genetic disease is growing, thanks to the passion of a small community group.
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Fragile-x syndrome is the most common known cause of inherited intellectual disability and the most common cause of autism spectrum disorder.
Symptoms of fragile-x are similar to autism, attention deficit hyperactivity disorder and Aspergers syndrome and is often misdiagnosed.
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However a group of affected families in Launceston have come together to raise awareness of the disorder, to help the community become more accepted of the challenges faced by those who live with it.
Jo Ryan and Sue Bowen, whose children live with the disorder, said they hoped the efforts of their group had a two-fold effect.
“We want people to be more aware of what fragile-x is so it helps our children when they are looking for employment or are in the community,” Ms Ryan said.
“Also, we want those who are living with fragile-x or their families to know we are here,” Mrs Bowen said.
The group hopes to become a Tasmanian support network for families who have children with fragile-x syndrome.
To help bring people together, the group has organised a high tea fundraiser.
Anna and Henry from MKR are the special guests.
Launceston’s Town Hall will also be lit up orange for fragile-x on July 23 at 6pm.
- The high tea will be held on July 29 at Mantra on Charles from noon until 3pm. Tickets are $43.46 per person, which includes food and one glass of bubbles. Tickets are available via Eventbrite.