Debra - The Butterfly Skin Charity

A heartfelt thank you to everyone who made the ‘Concert for Cathal’ such a special night in aid of Debra and other incredible charities! 🎶 Held at the Abbeyleix Manor Hotel, the evening was filled with amazing music and community spirit, with performances by Spink Comhaltas, Laois Comhaltas musicians, and others from across the area. On September 7th, we were deeply touched as donations were presented to each charity. Hearing from the representatives of each organisation, it was clear how much these contributions mean and how vital voluntary fundraising is to the work we do. 🧡 For us at Debra , this generosity will directly help individuals and families affected by Epidermolysis Bullosa (EB), enabling us to continue providing essential services and hope for the EB community. We can’t thank everyone enough for their support—it's partnerships and events like these that keep us moving forward. From the bottom of our hearts, thank you to all who took part, donated, and attended. Together, we're making a real difference! 🙌

🌟 Inspiration in action 🌟 Gary O'Callaghan recently cycled 300km for the 300 people in Ireland living with Epidermolysis Bullosa (EB), also known as “Butterfly Skin.” Inspired by his niece, Sienna, who was born with EB, Gary shared: “Seeing my sister and her husband’s challenges deeply struck a chord with me.” Gary and 17 colleagues from EY raised over €16,000 for Debra. This partnership shows the power of community and collaboration in driving change for the EB community in Ireland. Thank you, Gary, and the EY team for your support and dedication to our cause! 🧡

“Having the new EB medical alert card is a game-changer. It’s exhausting having to advocate for myself. This card helps paramedics take the right actions during emergencies.” – Séamus. For those living with EB, explaining what EB is can be a daily reality. Thanks to the support of our generous donors, Debra has introduced the first EB Medical Alert Card in Ireland - a critical tool that individuals with EB can carry with them at all times. This card provides essential information to medical professionals who may not be familiar with EB, ensuring that the right care is administered without delay. It alleviates the burden of having to explain a complex condition in moments when every second counts. When you support Debra, you enable us to make meaningful progress like this in our mission to assist those affected by EB. Because of your generosity, we're making life a little easier for people with EB, ensuring they receive the care they need when it matters most. We would love to partner with you! https://lnkd.in/eRfva9MT #corporatepartnership #CSR #philanthropy #epidermolysisbullosa #makeadifference

Dean Doyle from Wexford’s has won the Republic of Ireland's Strongest Man title for the second year in a row! Competing in New Ross last Saturday, Dean faced his toughest competition yet - his own twin brother and coach, Dillon, who battled through injury to secure third place. 💪 The brothers are well used to battling through pain. They both live with EB simplex which mainly affects their feet, meaning walking short distances, especially in heat, can cause excruciating blisters. Now Dillon, a personal trainer, aims to get to Giant’s Live in October, the official qualifier for the World's Strongest Man series - and the chance to become a professional athlete. Dean, meanwhile, has recently been accepted into New Ross Fire Service and has qualified for the All-Ireland championships - a chance to become the strongest man in the 32 counties. Both brothers got into weightlifting when they discovered it helped them cope with the tragic death of their sister Lena, 22, who died in a car crash in 2010. While most people would be daunted by the excruciating pain that comes with EB, Dean and Dillon see it as just another obstacle to overcome. Their story is not just one of personal triumph, but also one that brings much-needed awareness to EB, inspiring others who face similar challenges to push beyond their limits. A huge congratulations and thank you to both for all you're doing for the EB community. 🧡 #epidermolysisbullosa #EB #butterflyskin #inspiration #awareness

Debra is committed to advancing #EBresearch, bringing potential treatments closer to reality. These are just some of our research achievements, thanks to the kindness of our supporters and collaboration with Debra organisations and research colleagues. We might be a small charity but our mission and ambitions are huge. With strides like these being made, we are getting closer to potential treatments and one day, a cure. https://lnkd.in/eSEBSs6W #EB #healthresearchmatters #epidermolysisbullosa #research

Our shared values drive us in our work, constantly reminding us that actions speak louder than words. This is why we're deeply committed to making a meaningful impact for the EB community by delivering on our promises and consistently demonstrating honesty, trustworthiness, transparency, and appreciation. At Debra, our appreciation extends not only to the EB community but also to our dedicated staff. We strive to be a great organisation to work, volunteer, and collaborate with, and we prioritise recognising our team's hard work. We are thrilled to congratulate Cheryl Gunning on being shortlisted for the Charity Excellence Awards under the Emerging Leader category. Cheryl has been a transformative force within Debra, leading groundbreaking digital initiatives that have significantly advanced our mission. From launching our first-ever digital fundraising campaign, which raised over €127,000 during the pandemic, to developing Debra's first digital strategy, Cheryl’s innovative approach has dramatically increased our digital presence and engagement. Her leadership in our online campaigns has reached thousands and directly influenced critical meetings with government officials. We want to extend our heartfelt thanks to Cheryl and to everyone involved in our mission. Your commitment to the EB community continues to shine through everything we do.

They are doing it! Colin Farrell is taking on Emma's Run to 40 by running the Irish Life Dublin Marathon in honour of his dear friend, and to mark her miraculous 40th birthday. Together, they aim to raise €400,000 for Debra, supporting those with EB. You too can get involved in Emma's Run to 40. Walk, run, or roll 40K in your own time, in your own way and help us raise vital funds for EB. “Emma is the strongest person I’ve ever met,” Colin says. “Running this marathon with her is an honour. She’s already won the whole day!” Emma was born and has lived with the most severe form of EB. People with her type of EB do not usually live past 35 years of age. Despite the unimaginable pain and the doctors’ grim predictions, she has become an example of hope and resilience. Let’s rally together to support Emma and Colin. By taking on Emma's Run to 40 or donating, you become a part of Emma’s team, joining her in her fight and helping to give hope to all those affected by EB. Every euro will fund research, care and services, and transform lives. If you can support the fundraising initiative or want to join Emma in the Run to 40, visit debra.ie/runto40 Go Emma! 🧡🧡🧡

We are thrilled to announce our new partnership with MACE. Now, for every purchase of MACE water (500ml, 2L, or 5L), a 10c donation will be made to Debra, supporting those affected by Epidermolysis Bullosa. Additionally, you can contribute 1c to Debra by purchasing selected MACE own-brand products. You can also support us by donating cash at any in-store charity unit or by scanning the QR code below. Together, we can make a difference and showcase the power of the butterfly effect. 🦋 #Partnership #Charity #Support #MACE #ButterflyEffect

Thanks so much to Killashee Hotel for launching their Butterfly Afternoon Tea in aid of Debra and to celebrate Emma's 40th birthday. What a wonderful gesture. Emma's story is one of miracles and hope. Born with EB, she's defied all odds and now, as Debra's Patient Ambassador, she’s on a mission to transform the future for everyone with skin as fragile as a butterfly’s wing.⁣ ⁣ Help make Emma’s birthday wish come true with a special donation. Together, we can create a brighter future for those with EB in Ireland! 🧡

For the third year in a row, we are asking the Government to prioritise EB care. "EB has shaped our whole lives because it still is in control, it is a monster." Liz, mum to Claudia. People living with EB like Claudia face daily pain and endless struggles to secure proper care. Debra is calling for just €600,000 for a nurse-led home care package to ease the burden on families living with EB. Currently, care is outsourced to multiple agencies, leaving parents overwhelmed and isolated. We are doing everything to ensure all those impacted by EB receive the care they desperately need, but we need support from the state. Our voices are stronger together. Let’s push for change. https://lnkd.in/efgTyZce #Prebudgetsubmission #campaigning #epidermolysisbullosa #butterflyskin