What is Angelman syndrome?

What is International Angelman Day?

IAD History

IAD background

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:

  • There was a vast pool of families around the world who were being left behind regarding access to new information. Those families (and specialists) needed to hear about the latest research on Angelman syndrome – both in the medical field as well as with new technology and advances in communication (AAC).
  • Strong campaigns were needed to raise global awareness for Angelman syndrome – to educate people about this rare condition, to help promote research, and to support more fundraising efforts for research. A unified global voice would provide better data and a stronger incentive for research.
  • All countries had the same statistics of AS cases, but not all countries had an official national organization to support and advocate for families. By raising global awareness about our event, families around the world could connect with each other and create stronger networks in their own countries or global regions.
  • Different countries and ethnic groups have a wide range of cultural views regarding disability. A global event where families join to celebrate those with AS would serve to demonstrate how inclusion can work, and would also provide hope and moral support to those who live in less inclusive communities.

Choosing the date

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:

February 15

Uplifting AS spirits globally

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!

IAD is an opportunity to...

  • Raise funds for your organizations
  • Get media exposure to raise local, national and global awareness for AS
  • Invite local celebrities and/or people of status to your event to help raise awareness of AS
  • Light up landmarks in blue
  • Connect with other families and groups to strengthen networks
  • Collaborate with other groups to have a greater national or global impact

Creating a logo

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.

List of AS organizations

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
Contact: angelmannetwork@gmail.com

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