Longford folk urged to help butterfly skin kids and fly away with Leinster team

Longford folk urged to help butterfly skin kids and fly away with Leinster team

Leinster rugby fans are being offered the chance to travel with the team to an away match on a private jet and help children with the incredibly painful butterfly skin disease EB (epidermolysis bullosa).

Leinster rugby’s charity partners Debra Ireland, the charity that supports people with EB, is calling for volunteers to sign-up for the women's mini-marathon on June 5.

And those volunteers could win a super trip to Leinster's first away game of the Guiness Pro 12 season next autumn, including four star hotel accommodation and a private jet trip with the team.

EB (epidermolysis bullosa) is a genetic condition that causes the skin, both inside and out, to blister and wound at the slightest touch.

There is currently no known cure and the only treatment is constant painful bandaging of the skin.

"Last year we lost three of our little superheroes, eight-year-old Liam and babies Éanna and Lola to EB," said Debra Ireland's Judith Gilsenan.

"We want to honour their memories by ensuring that every child with EB gets as much care and support as possible."

Debra is trying to raise vital funds to help children and families with EB by providing day to day family support, nursing expertise and funding research to find a better treatments and possible cures.

"We receive no guaranteed state funding so we rely on people to help us keep our services and vital research going," said Judith.

"We are asking volunteers to sign up for Debra Ireland in the VHI women's mini-marathon and raise €100.

"All of our mini marathon volunteers will be entered into a draw for a chance to win this fabulous away trip with the Leinster rugby team."

To register and receive your Debra Ireland fundraising pack call Lyndsey at Debra Ireland on (01) 412 6924, or register online at

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