SPONSORS

© 2014 Rare Friends FNQ

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

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

$15 Adults, $5 kids over 5.

Lots of great prizes donated by local businesses

(you must pre register to be eligible)

Sausage Sizzle, Icypoles and drinks.

2020 Ambassador

Elena Leupu Mana Sagigi Suluvale was born July 25 2019. Before her birth, Elena had been diagnosed with two different common heart defects that are present at birth. The reason for the heart defects was one of two underlying rare diseases that Elena was to be diagnosed with later. The first diagnosis was CHARGE Syndrome, which earns its name from several of the features common in the disorder: coloboma (which affects her eyes), heart defects, atresia choanae (which affects her nasal bones), growth impairment, genital and ear abnormalities. Then Elena received the diagnosis of Severe Combined Immunodeficiency (SCID), at this stage, Elena, affectionately known as Elena Lion Heart,  was just two and a half months of age.  Elena lived her short live at the Brisbane Children's Hospital and tragically passed away after a brave fight on Christmas Eve 2019. We hold this years event in honour of Elenas battle.