'Finally they have heard our voices' Laois hero Emma Fogarty welcomes big funding

Within weeks of her marathon push with actor and friend Colin Farrell, Laois hero Emma Fogarty has announced another huge milestone on her 40th birthday year.

Emma has welcomed a Government agreement to give Debra Ireland €700,000 in annual funding to pay for nurses, psycologists and bandages for the 300 Irish people living with her horrific condition.

The state had been criticised by Emma and Colin Farrell for not allocating the funds Debra pleaded for in the budget, but on the day the General Election was announced, so too was the funding.

Abbeyleix woman Emma said it will make "huge changes" for Irish EB patients.

"Finally, they have heard our voices! Huge changes are about to be made in the world of #EB and Debra Ireland - The Butterfly Skin Charity.

"History is about to be made and I’m so excited to see the difference this will make to families living with this horrific condition. Thank you to everyone for their massive and continued love & support," Emma said.

Her Run to 40 fundraiser with Colin Farrell is nearing its €1 million target, now at over €860,000, donate here.

Debra Ireland made the announcement on Friday, November 8, crediting Emma for her big role in getting the funding.

"Exciting news! After years of relentless advocacy, we’ve achieved a major milestone: a commitment from the government to fund EB care in Ireland, with €700,000 annually for the development of better services and supports for EB.

"The work of people like Emma Fogarty with her incredible recent Run to 40 achievement, and Elizabeth Collins speaking up over the years as Debra Parent Ambassador, along with other families, have been crucial in getting us to this point. Their willingness to share their voices, their stories and raise much-needed awareness has played a pivotal role, alongside the work of our Advocacy and Family Support teams and you.

"Following Debra CEO Jimmy Fearon’s meeting with Health Minister Stephen Donnelly for Wicklow, the government has promised to build a more reliable, integrated care system for those with EB. Now, our focus is on turning this commitment into action, working alongside the government to ensure the funding is implemented effectively and to the highest standard.

"While this funding will cover the essential medical needs of people with EB, Debra will still need to provide emotional support, to offer a listening ear, and to keep fighting for the research and community resources that truly make a difference. We’ll work to ensure this funding remains in place in future health budgets, should there be a change of government following the general election.

"This result is a testament to the unwavering dedication of the EB community, Debra and you. Thank you for standing with us in this journey to secure the care and support that people with EB need and deserve.

The state will give €670,000 annually for the HSE to build a sustainable integrated community nursing care bringing relief to those managing the immense physical and emotional demands of EB. It is giving an additional €30,000 for adult psychological support, and a bandage supply scheme.

Stephen Donnelly Minister for Health and Professor Mary Horgan interim Chief Medical Officer with Dr Sinéad Hickey, Dr Rosemarie Watson and Jimmy Fearon Debra CEO outside government buildings.

The CEO welcomes the long fought for funding.

“This victory is a direct result of years of hard work and advocacy by Debra and the entire EB community—people like you, who inspire us every day to keep pushing for change.

“It has been a long road but at last, we have a firm promise from the Government that this funding will be in place for those living with EB in Ireland, and their families.

“This has been achieved through years of tireless advocacy and marks a key milestone in meeting the needs of those with EB and improving their quality of life.

“The emotional and physical toll on them is huge and many carers feel overwhelmed, isolated and out of their depth.”

He explained their role moving forward.

“While we’re excited about this funding, our support to people living with EB goes far beyond medical needs. We’re here to continue to provide emotional support, to offer a listening ear, and to keep fighting for the research and community resources that truly make a difference.

“This funding commitment is a huge step forward, but it’s only part of the journey. We’ll be working closely with the HSE to make sure this support reaches your family and others who need it most. And, of course, we’ll continue to stand with you, not just as advocates, but as a community.

“We will work to ensure the funding is included in annual health budgets, should there be a change of Government following the general election.

“This commitment to fund Debra on an annual basis is a big leap forward, our goal was to ensure that when a baby is born with EB or when someone gets a diagnosis, they are guaranteed the right level of medical care right thought the different stages of their life. We will continue to support everyone in the EB community with their psycho social needs.