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A community of supporters for Far North Queenslanders affected by rare conditions.

Endeavour Funship Playgound, Airport end of Cairns Esplanade

2.5 or 5km options (or show your support from the marquee)

$15 Adults, $5 kids over 5.

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Lots of great prizes donated by local businesses

(you must pre register to be eligible)

Sausage Sizzle, Icypoles and drinks.

2025 Ambassador, Iris. Angelman syndrome

Iris was always a happy baby, never really cried however she always struggled with feeding. She was first admitted to hospital at 1 month old for failing to thrive and was given a nasogastric tube to help her nutritional needs. That 2 week stay was the first of many (9 admissions in her 16 months). As she was often in hospital, the delays in her development became apparent to nurses and doctors early on. Around 5 months old genetic testing was conducted "just in case" as Iris was not meeting any typical milestones. Initial findings showed a deletion on chromosome 15 leading to 2 possible conditions, further testing was required but by this stage we had a pretty good idea. The results were confirmed by 8 months, and Iris was diagnosed with Angelman Syndrome. Angelman Syndrome (AS) is a rare neurogenetic disorder that occurs in only 1 in 15,000 births worldwide. It is caused by a deletion or mutation of the UBE3A gene on chromosome 15. This gene plays a crucial role in brain development, and its dysfunction leads to challenges with movement, balance, communication, and intellectual development. It is often misdiagnosed as non-verbal autism or cerebral palsy. However there is often a unique behavioral profile with Angelman Syndrome and it’s a friendly and happy trait expressed through frequent laughter, infectious smiles, excitability, and a strong social connection. Iris has the ability to make strangers smile, she brings joy wherever she goes.

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