When Emma Fogarty, Debra Patient Ambassador & Board Member, was born with Epidermolysis Bullosa (EB) her parents were told she would not live past 1 week. This year she beat all odds and turned 40 years old, which sadly is very rare for someone with EB.
EB is an incurable and painful genetic skin condition, also known as ‘Butterfly Skin’, as the skin of people with EB breaks and tears at the slightest touch.
To mark her miraculous 40th birthday, Colin Farrell took on Run to 40 by running the Irish Life Dublin Marathon in honour of his dear friend and Debra member, Emma Fogarty on October 27th 2024 and for the last 4km he pushed Emma across the finish line in her wheelchair. Together, they aimed to raise €400,000 for Debra but smashed this target by doubling it and reaching an amazing €815,000!
Debra’s Run to 40 initiatives called for people to get involved by walking, running, or rolling 40 kilometres to fundraise so that everyone with skin as fragile as a butterfly’s wing can access life-changing services and supports now, while Debra invests in EB research that can transform lives.
MACE joined this courageous campaign during the week before the Dublin marathon where retailers, staff, family and friends either walked 40,000 steps or, with a team, ran a collective 40km in the week of October 21st to 27th to help raise vital funds to support everyone impacted by EB in Ireland. Team MACE has raised almost €10,000 for Debra to date from the Run to 40 initiatives! Thank you to all who got involved or donated.
