International Angelman Day
The global Angelman Syndrome community celebrates INTERNATIONAL ANGELMAN DAY (IAD) annually on the 15th February, to raise awareness worldwide for Angelman syndrome and to raise funds for national AS organisations. The date selected is in recognition of the 15th chromosome affected, and February is international Rare Disease month. The official website for IAD can be found at: www.angelmanday.info
The Purpose of International Angelman Day is to:
Raise awareness worldwide of the condition
Mobilise people to action & encourage fundraising for the AS organisation in their country
Promote research and educational resources in the organisation’s own country
Remember those people with Angelman Syndrome who are no longer with us
IAD 2023 - Collaborative webinar with The Angelman Network, FAST & ASF. Two 1/2 hr sessions:
Roadmap to a Cure 2.0 (FAST) - with Allyson Berent-Weisse and Nycole Copping
AAC Q & A session (ASF) - with Amanda Moore and Communication specialist, Tabi Jones-Wohleber
Due to ongoing outbreaks of Omicron in NZ, families could request a free laminated AAC page ( created by the Angelman Academy) to be posted out for IAD 2022. Social media banners and posters were personalized and shared on various platforms.
An amazing celebrity Shout-out video was circulated for all the folk in NZ who have Angelman syndrome - from Nickson Clark (The Edge Breakfast team) in honour of his cousin, Jordan. Featuring tributes from Chris Parker, Sharyn Casey, Lance Savali, Buttabean, Bree and Clint ZM radio, Pirie Weepu, and Johnny Tuivas-Sheck.
Families gathered in Auckland (North Island) and Christchurch (South Island)
AUCKLAND: at Glen Eden Community House, Glen Eden. A pot luck lunch, wearing blue. Playground and kitchen available.
CHRISTCHURCH: Sunday 14th Feb at 5 Tisch Place, Christchurch. Shared lunch.
IAD Family events
Events held in Palmerston North, Christchurch and Auckland. Many thanks to BestStart Marne (Palmerston North) - they organised a great fundraiser and Angelman awareness event with options to run/walk 5 or 10km. A family picnic was held in Christchurch and in Auckland at Orewa Beach - with Circability providing free entertainment,
International Angelman Day Event, Auckland, Sat 16th Feb at Papatoetoe Primary School. The Angelman Network was very grateful to have the Hon. Carmel Sepuloni, Minister for Disability Issues, attend as guest speaker - to meet our families and share information on some positive changes coming up soon for the Disability sector.
Family gatherings were held in Auckland (North Island), Palmerston North (Lower N Island) and Christchurch (S. Island). In Christchurch, families enjoyed time together at the Southern Centre, exploring the sensory room and enjoying the swim school pool.
Eleven Auckland families gathered together to enjoy the Trillian Trust FunFest held during the summer school holidays. The accessible location, free activities, rides and attractions on offer, made it a very special treat for our families.
The theme was Love & Inclusion at the IAD event held at Estuary Arts Centre, Orewa on the 14th Feb. Hermant Thacker shared his research work on adults with disabilities and family care, and Natalie Todd spoke on the AGOSCI 2015 conference and AAC.
The Angelman Network had a stand at the Okura Forest Festival, North shore, Auckland - on 14th Feb, Valentine’s Day. Our theme was 'Awareness Eyes'. The live music festival was a super backdrop for our awareness campaign. Folk could decorate a mask, learn more about AS, and make a donation.