Well done to the members and friends of Stackstown Golf Club who’ve raised €6,000 for Debra Ireland, the charity that supports people with the incredibly painful butterfly skin disease EB.
The club’s Lady Captain Mary Grogan chose Debra for her charity day when she learned of the tragic death of eight-year-old EB patient Liam Hagan from Monaghan last year.
EB (epidermolysis bullosa) is a rare and incredibly painful genetic condition that causes the skin, both inside and out, to blister and wound at the slightest touch.
“I first became aware of butterfly skin EB through family members who are involved with Debra Ireland and when Liam died I thought that this is a message to me to get involved and do something,” said Mary.
Her Lady Captain’s charity day on August 25th saw 192 golfers from 25 clubs in Dublin and surrounding counties gather at the Stackstown club for a semi-open golf tournament that not only raised funds but a great deal of awareness for EB.
“We started work well in advance, my niece made butterflies which we put up all around the club encouraging people to Google EB and find out more about the reality of living with this extremely distressing condition,” said Mary
The butterfly is the symbol of Debra Ireland, the national organisation that supports the 300 people living in Ireland with EB.
“We wanted to educate people about butterfly skin and make sure everyone knew just how worthy a cause EB is,” Mary explained.
“We put information on the club’s Facebook page and lots of posters from Debra of children with butterfly skin who have to be bandaged almost from head to toe to prevent infection and protect them from everyday life.”
At their recent cheque presentation Jimmy Fearon, Chief Executive of Debra Ireland congratulated Mary and all at Stackstown Golf Club for their efforts.
“They worked incredibly hard not only raising €6,000 but also in the way they have spread the word about EB and raised awareness about the condition,” he said.
Mary thanked the ladies committee and her team at the Stackstown club for all their hard work and also thanked the local clubs and businesses who supported their efforts.
A fire which destroyed Stackstown function rooms has meant club activities have been confined to a portacabin in recent months.
“Organisations in the locality have rallied around us until the club rooms can be rebuilt,” said Mary.
“St John’s GAA have been a fantastic help, local group Rhapsody with Terry Fox kindly provided entertainment free and we’ve also got great support from local restaurants such as the Coach House in Ballinteer and other local businesses, so a big thank you to all,” she concluded.
For more information on Debra Ireland see www.debraireland.org
Text BUTTERFLY to 50300 to donate €4 to Debra Ireland.