Local Fundraising night in aid of Angelman Syndrome Ireland
By Ryan Morgan
On Saturday June 15th, the family of Shane Gorman extend an open invitation to their fundraising night for Angelman Syndrome Ireland. This much anticipated night of entertainment and craic will take place in the club rooms of Naomh Malachi GFC, Shelagh, Dundalk at 9.00pm. Music will be provided by legendary country and western musician, Mick Flavin.
Five year old Shane suffers from a rare genetic disorder referred to as Angelman syndrome, which affects the nervous system and induces both physical and intellectual disabilities. A person with the condition will have a near-normal life expectancy, but will require round-the-clock care for the rest of their lives. In this country, those with the disease and their caregivers are largely supported by the charity Angelman Syndrome Ireland.
This organisation is driven to promote and support crucial research into the disease. They raise awareness of the condition on the national stage and provide a support network for those living or caring for somebody with the condition. It also liaises on their behalf with service providers who can offer practical and emotional support. Its efforts in tackling Angelman syndrome is endorsed by health and social care bodies across the island and also by its Honouree Patron, President Michael D. Higgins.
Speaking to the Examiner, Shane’s father Seamus hoped the event would be “well attended and enjoyed” by people throughout the locality. He applauds the lifeline the charity has provided for his family and other affected families throughout Ireland, both by updating them on developments in research and organising days out for the children, which included a recent visit to Dublin zoo.
Founder and board member of Angelman Syndrome Ireland, Sara Hetherington, who is also a parent of a child with the disorder, reaffirms the invaluable role the not-for-profit has played in establishing a support and social network around the disease. Owing to the rareness of the illness and Ireland’s status as a relatively small country, she and another mother were motivated to start the organisation in 2011 to enable all parents and children affected by the disease to come together to better understand the treatments of Angelman syndrome and to help each other through its unique challenges.
The organisation is also a voting member of Angelman European Alliance, which enables them to work with other similar organisations across the continent to channel funding to deserving medical research and social care incentives across the world. Nationally, they are also advised by some of the leading minds on Angelman syndrome from both the fields of academia and medicine.
Tickets for the fundraiser are available at the door on the night for €10 or by contacting the event’s organisers, Seamus on 0863256906 or Sadhbh on 0876667816. Any further enquiries regarding the night can be directed to the same.