Kia ora Angelman whanau and friends,
Greetings and good wishes for this great New Year! We hope you have all had an enjoyable holiday season with time to take some breaks from caregiving, and to recharge your own batteries. Unfortunately, Covid is doing the rounds again - and with schools starting soon, its probably a good time to go through your family's Covid plan again. Check up on boosters, pain meds, and supplements, keep some frozen meals in stock, and reconnect with family and neighbours, to ensure some outside support, should you need it.
Last year we celebrated the 10th anniversary of International Angelman Day, which was a huge milestone for raising global awareness!! As a founding organization of IAD, The Angelman Network managed this global event for the past 10 years. At our 2023 AGM, trustees felt it was time to pass on this stewardship role to another country in the IAD collective, so that we can focus on our national goals.
We are thrilled to announce that the Angelman Syndrome Foundation (USA) has stepped forward and will manage this event for the next 3 years. There is also a new, updated IAD website full of excellent resources!! So PLEASE all get behind raising awareness for Angelman Syndrome in your own local community, and fundraise for The Angelman Network!
To find out more about the work we do in the background on behalf of all those impacted by Angelman syndrome in NZ, please see our 2023 Annual Report here.
There is always a lot happening over February (IAD and Rare Disease Day) and March (Rare Disorders month in NZ), so don't forget to follow our FB page to keep up with announcements and regular IAD updates.
Aroha nui,
Ursula Christel
Chairperson, TAN Board
angelmannetwork@gmail.com
021-1382878