It’s estimated that about half a million people around the world are affected by a rare skin disease called epidermolysis bullosa (EB), better known as ‘butterfly skin’, that causes skin to blister and tear extremely easily.
On the 3rd of October, Debra Ireland charity shared on their social media very upsetting news that the government in Ireland has neglected to prioritize funding for EB care in its 2025 budget. Yet Emma Fogarty, the country’s longest survivor with this rare genetic condition, wasn’t going to give up and together with her old friend Colin Farrell, came up with an idea to participate in Dublin Marathon, in this way helping to raise nearly $700k for a charity.
More info: Emma Fogarty
