Kia ora Angelman whanau and friends,
We hope all are safe and have avoided the damage and disruptions of the ongoing weather events. PLEASE check in with us if you have some specific needs, or if there are any gaps in the supports you are getting. It's important for us to know that we are reaching all our families in such stressful times.
On a more positive note, a group of 4 Angelman families thoroughly enjoyed a wonderful Auckland Whanau Picnic at Keith Park on the 18th Feb. It was an absolute treat !! Many, many thanks go to Angel-mum, Darcelle Bell-Ataata and her incredible team from The Pride Project. A lot of effort went into the set-up, delicious free kai (best fruit ice-cream EVER!!), the fun trike rides, and all the kids' entertainment. The angels, their siblings and friends, all had a most enjoyable time together. See pics below.
And a massive thank you to the Ellis family in Whangarei, for the wonderful effort to Light Up Blue for IAD!! We hope this will inspire more families to contact their local council or community groups, and get more NZ landmarks lit up for IAD 2024.
We are now moving towards Rare Disease Day, on the 28th Feb. The Angelman Network is a member of the RDNZ collective, which is the only umbrella group for rare disorders in New Zealand. They provide a strong common voice to advocate for an equitable healthcare system that works for the 300,000 Kiwis with a rare condition. We will be doing promos to raise awareness for this lobby group, during the month of March.
We encourage all our families to participate by sharing the social media posts for the #GlowUpShowUp campaign. More below...
Aroha nui, stay well and take care.
Ursula Christel
Chairperson, TAN Board
angelmannetwork@gmail.com
021-1382878