Our NZ fundraising running/walking group called ACTION ANGELS walked the 5km Waiheke Coastal Challenge route on Saturday, 12th March, dressed in our signature angel regalia. Due to the tsunami warnings, the official race had been postponed to the following day, making it tricky for family plans to be adjusted at such short notice. So our members braved the ferry trip to Waiheke Island to complete the distance and honour the sponsors.
“At this point, our team’s participation in local fun runs/walks is aimed at raising awareness more than fundraising, “ says Ursula Cranmer, co-founder of The Angelman Network. “I have a 15yr old son with Angelman syndrome, and very few people – even those in the medical professions – are aware of this rare condition. Angelman Syndrome (AS) is a neuro-genetic disorder characterized by intellectual and developmental delay, sleep disturbance, seizures, jerky movements (especially hand-flapping), frequent laughter or smiling, and usually a happy demeanor. People with AS are sometimes known as ‘angels’, both because of the syndrome’s name and because of their youthful, happy appearance – hence our walking team’s angel outfits.”
One of the first goals of The Angelman Network is to publish some informative brochures to be displayed in medical centres around New Zealand. Ursula says, “The number of AS incidents is calculated to be around 1:15 000, and yet we only know of about 10 families in the entire Auckland region,” states Ursula. “It would be wonderful if more Angelman families made contact with us, as we are able to offer the support of a large international network, as well as direct contact with families and local advice.”
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