ANGELMAN SYNDROME IRELAND
The organisation was formed in November 2011 to :
� Provide a support & information network offering fact based knowledge about living with Angelman Syndrome for families , caregivers and service providers throughout Ireland
�
Finance and encourage research efforts in line with current international work to advance understanding and deliver a treatment for Angelman Syndrome for people in Ireland
Our voluntary board and advisory team are recognised in their respective fields of neuro-development , paediatrics , clinical trials , medical technology , business strategy , and finance & charity governance .
BOARD OF DIRECTORS : � Dr . Kevin Dunne — Consultant Paediatrician ,
University College Hospital , Galway . � Mairsil Claffey — VP Clinical , Regulatory and
Quality with Neuravi Ltd � Robert Moynihan — Finance & Governance � Ashling Kearns — Marketing Strategy � Sarah Roarty — Parent � Sara Hetherington — Parent � Vincent Gribbin — Parent
You can find out about our organisation on www . angelman . ie
INAUGURAL INTERNATIONAL ANGELMAN DAY A GLOBAL SUCCESS
When the board of Angelman Syndrome Ireland first discussed the possibility of establishing an International Day devoted to Angelman Syndrome little did we anticipate the groundswell of support there would be from the four corners of the globe .
The first step was to seek out and contact all the organisations supporting those with AS around the world and collectively agree on a date which we would all observe and celebrate as International Angelman Day . The date voted on was February 15 th 2013 – February as it is already recognised worldwide as Rare Disease Month and the 15 th as a symbolic reference to Chromosome 15 .
The purpose of this day is to :
1 . Raise awareness worldwide of Angelman Syndrome 2 . Mobilise people to action & encourage fundraising for the individual organisation in their country 3 . Promote research and educational resources in the organisation ’ s own country . 4 . Remember those people with Angelman Syndrome who are no longer with us .
Next steps that have been discussed are :
1 . Formalise an international working group to plan and coordinate annual activities
2 . Each country ’ s organisation write to their local or national government to ask them to officially recognise " International Angelman Day " as an annual event on February 15th
3 . Develop a website as a permanent home and central repository for all activities
The inaugural International Angelman Day was observed by over 30 organisations and hundreds of individuals worldwide . Its resounding success provides a solid platform to plan and organise for next year and indeed 2015 which will be the 50th anniversary of Dr Harry Angelman identifying Angelman Syndrome and also Dr Harry ’ s 100 th birthday .
We are humbled that an idea from our small and recently founded organisation in Ireland was embraced by the global community and are delighted that International Angelman Day provided the inspiration for this e-zine “ Angelman Today ”. We wish the editor and team every success with this exciting endeavour .
Please email asinternationalday @ gmail . com with ideas you may have to observe International Angelman Day in 2014 & beyond .