Emma Fogarty, Ireland’s longest-living patient affected by the severe skin disorder epidermolysis bullosa (EB), has successfully raised an impressive €1 million for the charity Debra, less than a year after completing the Dublin City Marathon alongside Oscar-nominated actor and fellow Dubliner Colin Farrell. This campaign, inspired by Emma’s resilience and determination, highlights the ongoing need for research and support for individuals living with EB.
Emma’s Battle with the Most Severe Form of EB
Emma, a resident of Laois, suffers from a debilitating form of EB where even the gentlest touch causes intense blistering on the skin, requiring frequent bandage changes. Despite these challenges, she set out to raise funds and awareness by undertaking the marathon with Farrell, who committed to running the full 42 kilometers and pushing her wheelchair during the last 4 kilometers.
Fundraising Journey and Community Support
Initially, the charity Debra aimed to raise €400,000 during the ‘Emma’s Run to 40’ campaign, coinciding with Emma’s 40th birthday last summer. However, after Emma and Farrell appeared on the Late Late Show ahead of last October’s marathon race, the fundraising target soared. Donations continued to pour in, ultimately reaching the €1 million milestone. These funds are designated to support vital research efforts focused on finding treatments for this currently incurable condition.
Reflections on the Marathon and Its Impact
Colin Farrell acknowledged Emma’s remarkable courage, saying,
“All the credit goes to Emma on this one.”
He expressed pride in the generous support from the Irish public for his friend and the charity, emphasizing the ongoing necessity of public backing for those enduring the extreme pain caused by EB. Emma reflected on the physical toll of the marathon:
“The nature of EB means I knew that for those 4km, I would feel everything impact on my skin; every little bump on the road, every pebble and twist and turn, and I did.”
She added,
“But because the money raised provides hope to others and funds research into this condition, I was prepared to endure that.”
Charity Leaders Praise Fundraising Success
At the cheque presentation held at Killashee House Hotel & Spa in Kildare, Debra CEO Jimmy Fearon described the €1 million contribution as a significant achievement born from the strong friendship between Emma and Colin and their shared dedication to raising awareness of EB. He noted,
“This incredible gesture was born out of their close friendship and the shared passion they have for EB and the need to one day find a cure,”
underlining the importance of ongoing efforts to support those affected by this condition.
Looking Ahead: The Importance of Continued Support
The success of Emma Fogarty and Colin Farrell’s fundraising efforts demonstrates the power of community and public involvement in tackling rare diseases like EB. The funds will play a crucial role in advancing research aimed at improving lives and ultimately finding a cure. As Emma stated,
“But the fight doesn’t end here; as long as people are still living with the extreme pain of EB, there will be a need for public support.”
