Actor Colin Farrell celebrates International Angelman Day

February 15^th2013- This Friday, the 15^th of February marks the first International Angelman Day. Research charity Foundation for Angelman Syndrome Therapeutics (FAST) Australia and national support group Angelman Syndrome Association have joined with Angelman Syndrome organisations from around the globe to raise awareness and funding for research into this disorder. 

Angelman Syndrome (AS) is a genetic disorder caused by loss of function of the UBE3A gene located on chromosome 15. AS is characterised by developmental delays, epilepsy, and problems with motor coordination (ataxia) and balance. Individuals with AS rarely develop functional speech. AS affects approximately 1 in 15,000 live births. 

FAST Australia Chairperson Meagan Cross said, “International Angelman Day is an opportunity to celebrate our children’s achievements and recognise their struggles, it’s a chance for those affected by this rare condition across the globe to come together as a community.” 

Angelman Syndrome Association president Liz Stanley said families would be gathering in locations around Australia. “Having support from other families is invaluable, especially for those who are newly diagnosed. They are not alone,” Liz Stanley said. 

Award-winning actor Colin Farrell is father to James, who is diagnosed with Angelman Syndrome. The actor spoke of his thoughts on the day; “I'd like to take this opportunity to thank all those who will play their part in International Angelman Day on February 15th.  It's a really beautiful thing to mark this day as a celebration of our children and all they have achieved and as an opportunity to introduce more people to both the beauty inherent in and the trials faced by those with AS.  Anything anyone can do to raise awareness is greatly appreciated. No gesture is too small. No such thing as the insignificant word or deed. I wish all the hardworking folks at FAST all the best with the endeavour and all the hard-working and hard-loving parents around the world a collectively successful and unified day." 

Australian families have cause to hope that a treatment for Angelman Syndrome could be realised in the near future. A trial in the United States has been testing the effect of the common antibiotic, Minocycline, in treating children diagnosed with Angelman Syndrome. Preliminary results showed improvements in behaviour, attention and communication. International Angelman Syndrome experts presented the latest research developments to the Australian medical and research community, at an Inaugural Scientific Symposium, held at the Royal Children's Hospital Melbourne on February 1. 

FAST Australia is calling for donations in their “Give $15 for the 15^th” Campaign. “FAST is now in a position to join the international search for a therapeutic to treat the syndrome, we are calling for people to support the work of the Foundation, and families affected by Angelman Syndrome, by making a donation of $15,” said Meagan Cross, whose 5yo daughter is affected by the syndrome.

Donations can be made at give.everydayhero.com/au/151515.

For further information visit www.CureAngelman.org.au or