In 2012, two parents of children with Angelman syndrome living on opposite sides of the world – Ursula Christel in New Zealand and Sarah Roarty in Ireland – both recognized the need for an event to draw together all families impacted by Angelman syndrome, from all around the world.
The points we considered were:
At that time, there was a total of 31 official, national AS organizations around the world. All these organizations were approached and invited to submit suitable dates to be considered for an International Angelman Day. After creating a short-list of three choices, each organization had a single vote. The winning date was:
We all know how hard this AS journey can be, so there is no intention to put more pressure on families or organizations. IAD was always intended to be a fun, voluntary event for families – to help uplift spirits and create opportunities to connect with your own local communities.
We do not expect large events in every country, every year. We just invite you to do what you can. You are encouraged to pace yourselves to avoid burn-out, and if possible, start planning your events in October. The benefits of a successful IAD event are multi-fold!
A global logo competition was held shortly after with a deadline for submissions. The final selection of design entries was sent to all participating organizations on a voting form. The winning design was the logo we have used since our inaugural IAD event, held on 15th February, 2013.
Since 2013, the number of AS organizations that have joined our informal global collective to celebrate IAD, has almost doubled. The Angelman Network (based in New Zealand) volunteered to set up the IAD website and manage it. We keep a list of all the groups around the world on our website. This contact information is invaluable should anyone wish to get in touch with an organization.
Because logos and website addresses change over time, and new FB pages start up and others close down, we ask that we be contacted regarding any updates or changes that need to be made to our website. It is important to keep those contact details up-to-date.
The positive ripple-effects of IAD celebrations seem to spread further afield each year. Let’s keep up the momentum and the fun, by working on this together!
Ursula Christel (parent)
The Angelman Network, New Zealand