Ireland Turns Blue for International Angelman Day
On Saturday 15 February, prominent landmarks in Ireland and around the world will be illuminated
in blue to raise awareness of Angelman Syndrome, a rare genetic disorder that affects around
500,000 people worldwide and up to (400) people here in Ireland. Prominent landmarks in Ireland
include the Rock of Cashel, Kilkenny Castle, Cork & Limerick City Halls and the Four Courts in
Dublin. International landmarks include Niagara Falls and the world’s tallest building, the Burj Khalifa
skyscraper in Dubai.
International Angelman Day (IAD) is an annual event held on February 15th, promoted by
over 50 charitable/support organisations based in over 40 countries around the world. The
aim is to raise awareness about this rare condition to help fundraising and promote
research. Here in Ireland, the event is promoted by Angelman Syndrome Ireland (ASI), a
voluntary organisation that provides a support network for families affected by AS and
raises funds for research.
Contact: Crystal McKieran crystal@angelman.ie – Chair ASI
Background Information
Angelman syndrome (AS) is a rare neuro-genetic disorder that occurs in one in 15,000 live
births or 500,000 people worldwide. Angelman syndrome shares symptoms and
characteristics with other disorders including autism, cerebral palsy and Prader-Willi
syndrome. Due to the common characteristics, misdiagnosis occurs often.
People with Angelman syndrome have developmental problems that become noticeable
by the age of 6 – 12 months. Other common signs and symptoms usually appear in early
childhood like walking and balance disorders, gastrointestinal issues, seizures and little to
no speech. Despite these symptoms, people with Angelman syndrome have an overall
happy and excitable demeanour. An individual with AS will light up a room with their smile
and laughter. Individuals with AS will require life-long care, but can live long, happy lives.
Research into Angelman Syndrome has made considerable progress. Scientists now know
what causes AS and have been able to reverse it in mouse models. There is therefore a
realistic prospect of finding a cure for Angelman syndrome, underlining the need to keep
supporting research.
Angelman Syndrome Ireland
Angelman Syndrome Ireland, is a registered charity established in 2011 to provide support
and information about this rare neuro-genetic disorder. ASI is run by parents for parents
and families affected by the condition. We strive to raise awareness, provide resources,
and foster community. We organise events, offer information on available services, and
promote and fund basic research. Through advocacy and support, Angelman Syndrome
Ireland aims to enhance the quality of life for individuals with the condition and empower
their families.