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Families in Warkworth marked International Angelman Day on February 15 with a picnic at Parry Kauri Park.
Whanau, friends and supporters dressed in blue to mark the day, which raises awareness for Angelman Syndrome (AS), a rare neurogenetic disorder affecting chromosome 15.
Event organiser Ursula Christel, who is also the Angelman Network chair and International Angelman
Day co-founder, expressed gratitude for the turnout, emphasising that the day was about both awareness and fostering connections among families.
“It’s about helping families feel less alone,” she said. “As an affected parent, I know first-hand how hard it can be to get out into the community and enjoy yourselves in a relaxed environment.
“Days like today allow us to share our stories openly, support each other and build lasting friendships. We all leave inspired and energised for the year ahead.”
Angelman syndrome affects one in 15,000 births, causing developmental delays, severe speech impairment, seizures and motor issues, and yet individuals often display a happy demeanour, frequent laughter and a love of social interaction.
AS affects all ethnicities, males and females equally, and many are fascinated with water. The summer picnic weather made for a fun-filled afternoon, complete with watermelon, bubble blowing and a lively water-fight, enjoyed by both children and adults.
Christel said that Aotearoa NZ still has no formal registry for rare disorders, nor a Centre of Expertise, leaving whanau-driven support organisations to become the experts and advocates. She said this places more strain on families that already face daily challenges.
“As a member of the Rare Disorders NZ collective, we support the urgent call for an immediate action plan in the new health system to implement the Rare Disorders Strategy.”
The Angelman Network is a registered charity, raising funds for grants, educational resources and events through a Givealittle page.
For more information, visit www.angelman.org.nz
