Irish Family Conference
Trustees and members of the ISG travelled to Dublin, Ireland for the first Irish Family Conference.
ISG members at Croke Park
12 families gathered at the Croke Park Hotel in Dublin. This is adjacent to the world famous Croke Park Stadium, HQ of the Gaelic Athletic Association, Ireland’s biggest sporting organisation, and a well known International Rugby venue.
The day was partially sponsored and attended by several companies: Elave, Johnson & Johnson and Greencross.
Members were greeted with refreshments, some having travelled across Ireland for hours to reach the venue. Following a brief welcome and introduction to the day’s events, families were joined by Prof Alan Irvine, Dr Rosemary Watson and Specialist nurse Bernie Evans from Our Lady’s Children’s Hospital, Crumlin. Prof Irvine gave an overview of ichthyosis and continued by providing information on some of the interesting updates from ongoing studies into the various types of ichthyosis. Members were invited to ask questions of the experts, which generated a lot of interaction between families and the medical professionals.
In a room next door, the children were supervised playing and being creative with various craft activities.
Following a break and refreshments – during which the pharmaceutical companies spoke to patients about their products and handed out free samples – the group broke into two groups sufferers and parents (including the medical professionals) – to talk openly about living with ichthyosis. It was an opportunity to discuss concerns, share anecdotes and any aspect of living with the condition that arose.
A leisurely lunch followed, which once again gave families the opportunity to share their stories and advice about dealing with ichthyosis. The Vaughan family from Co. Clare, Ireland joined us to present the Marina Vaughan fundraising award to the Kenny family for their amazing fundraising achievements during
2009. Marina sadly passed away last year and Mary Kneafsey, Ireland’s Regional Contact for the ISG, has established an Irish Fundraising award in her name.
A guided tour of Croke Park stadium was on the agenda for the afternoon’s activity. The tour was fascinating and everyone enjoyed the ‘behind the scenes’ views and stories of such a fabulous venue.