TROY Crane has always thought of his two little boys as angels but his youngest, 10-year-old Mason, is his Angelman.

Mason has been diagnosed with a rare disease known as Angelman Syndrome (AS), a disease that is not well known within the local community, but that is something that Troy is determined to change.

On August 3 Troy will be the under card in a headline fight at the Fortitude Boxing Gymnasium against three different weight classed boxers in six heart-pumping rounds, and is hoping to raise at least $5000 for the Foundation for Angelman Syndrome Therapeutics (FAST) and help raise awareness of the rare disease.

“This disease receives no form of government funding to help find a cure so we are basically on our own here,” Troy said.

“Fortitude Boxing gave me the opportunity to have this fight night and talk about the disease and use the night as a way to raise funds for the foundation.

“This is the third time I will be taking to the ring for this cause.

“My boy’s case is about one in 30 million.

“I just want to make enough noise that we can walk down the street and ask someone ‘do you know what Angelman Syndrome is’, like you would do with autism or Down syndrome, and their answer would be yes.”

AS is a severe neurological disorder characterised by profound developmental delays, problems with motor co-ordination (ataxia) and balance, and epilepsy.

“There is nothing out there for parents who have children with Angelman, there is no handbook,” Troy said.

“So my goal is $5000 on the fight night to go toward FAST but I am hoping to get outside that… I have been told that to find a cure they only need $15-20 million and it could be cured in 10 years if they got the funding now.

“There will also be some other fights on the night with some great boxers so it will be a good night of great fights.

“I am fighting against a notorious fighter so it’s going to be very tough for me but it’s all about raising funds and awareness.”

The fight night will be held at the Fortitude Boxing Gymnasium at 12-14 Kyabra St, Newstead with doors opening at 6.30pm.

For more information about Angelman Syndrome, go to www.cureangelman. org or to donate to Troy’s cause, visit https://give. everydayhero.com/au/troy.

ANGELMAN SYNDROME

Angelman Syndrome is caused by a severe reduction of expression of the gene UBE3A in the brain.

UBE3A is a ubiquitin ligase whose function and targets relevant to AS are still unknown.

Angelman Syndrome affects only one in 15,000 people

These figures were taken from the FAST website.

 

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