- Видео 188
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Debra
Добавлен 13 фев 2011
DEBRA Ireland is the national charity established by parents in 1988 to provide patient support services and to drive research into treatments and cures for those living with the genetic skin condition, epidermolysis bullosa (EB). People with EB, have skin that is as delicate and fragile as the wings of a butterfly and just as easily damaged. The condition is extremely painful and leads to disability and deformity. Many of our patients who survive childhood face the frightening reality that they could develop a very aggressive form of skin cancer, due to the constant breakdown of their skin.
Like us on Facebook and follow us on Twitter for regular updates, the links are below.
Like us on Facebook and follow us on Twitter for regular updates, the links are below.
Let’s celebrate a miracle: Emma turns 40 today!
She’s achieved the unimaginable. Today, Emma turns 40. For someone with severe Recessive Dystrophic EB, this is nothing short of a miracle. Emma's journey has been marked by relentless pain and countless challenges, but thanks to your support, she has come this far.
“Whatever happens in life, whether it be bad news, hospital visits, or needing a new wheelchair, I’ve always felt safe and acknowledged knowing Debra is there.”
Your donation is what enables Debra’s work to continue.
“Whatever happens in life, whether it be bad news, hospital visits, or needing a new wheelchair, I’ve always felt safe and acknowledged knowing Debra is there.”
Your donation is what enables Debra’s work to continue.
Просмотров: 99
Видео
Emma Fogarty shared her experience living with EB
Просмотров 1473 месяца назад
Emma Fogarty shared her experience living with EB
Emma's 40th birthday wish appeal
Просмотров 1424 месяца назад
Against all the odds, Emma is about to celebrate her 40th birthday. No one expected her to survive for this long - because people with her type of EB almost never do - but she has always been encouraged to be a fighter fighter. Now she is asking people to donate to Debra, so everyone with EB in Ireland can live the longest, fullest life possible possible. debra.ie/give
The EB research lab at University College Dublin
Просмотров 746 месяцев назад
The EB community told us what they wanted us to focus our research on, and as a result, we’re funding 15 projects looking at wound healing, quality of life, gene therapy and pain management. Recently we invited them to visit the EB research lab in University College Dublin to meet researchers and hear about the ground-breaking projects they helped shape.
Debra's presentation at Oireachtas Health Committee
Просмотров 467 месяцев назад
On the eve of #RareDiseaseDay2024, Debra’s Head of Advocacy, Research and Policy, Sinead Hickey, along with Deirdre Callis, Head of Family Support Services, and Dr Rosemarie Watson, Debra Board member and former Director of EB Services in Ireland, presented the need for access to health services for people impacted by EB to the Oireachtas Committee on Health. They were also joined by Casey Conn...
Kate Cogan and Deirdre Callis on Ireland AM
Просмотров 1787 месяцев назад
Kate Cogan and Deirdre Callis on Ireland AM
What is tough? Debra's organisational video
Просмотров 8798 месяцев назад
Proud Debra ambassador, Colin Farrell, joined forces with Debra to present the stark reality of life with epidermolysis bullosa, an incurable and extremely painful condition that makes people's skin as fragile as a butterfly wing.
Claudia's RTe interview December 2023
Просмотров 2868 месяцев назад
Claudia's RTe interview December 2023
Happy New Year 2023 and thank you for supporting those living with EB.
Просмотров 859 месяцев назад
Happy New Year 2023 and thank you for supporting those living with EB.
Born with the most severe form of EB, Casey's skin can blister at the slightest touch
Просмотров 2,1 тыс.9 месяцев назад
Casey was born with the most severe form of EB. Her skin can blister at the slightest touch.
Christmas 2023 Katie
Просмотров 58 тыс.9 месяцев назад
Miriam and John, parents of Katie who died at just 8 weeks from a severe and fatal form of EB, have shared their story with us to show why your support is so important for families living with EB.
For the first time ever, EB is raised as a topical issue at the Dáil
Просмотров 18310 месяцев назад
For the first time ever, EB is raised as a topical issue at the Dáil
EB Awareness Week 2023
Просмотров 9611 месяцев назад
Prioritising EB care means investing as little as two cups of coffee per person with EB a day. The economic burden of caring for people with EB n Ireland exceeds €130,000 a year per patient, our new research reveals. We will continue to fight to change this. To kick start the week, on October 24th we delivered a political briefing to launch our report ‘Life with EB in Ireland: An international ...
Emma Fogarty Pre-Budget Submission 2023
Просмотров 111Год назад
Emma Fogarty Pre-Budget Submission 2023
Our "Small ask, big impact" 2024 pre-budget submission campaign
Просмотров 206Год назад
Our "Small ask, big impact" 2024 pre-budget submission campaign
Emma Fogarty calls on Minister for Health to meet with Debra, a small ask that can have a big impact
Просмотров 62Год назад
Emma Fogarty calls on Minister for Health to meet with Debra, a small ask that can have a big impact
Emma Fogarty calls on the Minister for Health to prioritise EB care - Pre budget 2024
Просмотров 136Год назад
Emma Fogarty calls on the Minister for Health to prioritise EB care - Pre budget 2024
Claudia Scanlon and Johnny Sexton on the Late Late Show
Просмотров 5 тыс.Год назад
Claudia Scanlon and Johnny Sexton on the Late Late Show
EB Awareness Week 2022: Testimonial by Rachel
Просмотров 97Год назад
EB Awareness Week 2022: Testimonial by Rachel
EB Awareness Week 2022: Testimonial by Liz (Parent Ambassador and DEBRA Ireland's Board member)
Просмотров 178Год назад
EB Awareness Week 2022: Testimonial by Liz (Parent Ambassador and DEBRA Ireland's Board member)
Emma and Pat Fogarty talking about life with EB
Просмотров 2042 года назад
Emma and Pat Fogarty talking about life with EB
Claudia live on Ray D'Arcy Show for EB Awareness Week 2021
Просмотров 2862 года назад
Claudia live on Ray D'Arcy Show for EB Awareness Week 2021
Claudia Explains EB (epidermolysis bullosa)
Просмотров 1892 года назад
Claudia Explains EB (epidermolysis bullosa)
Emma and Trisha Lewis on Cork96FM StepTember
Просмотров 583 года назад
Emma and Trisha Lewis on Cork96FM StepTember
Such a beautiful little girl stay strong ❤️
😊
The fact that your baby was born means a lot. God wantted her back though. She is amongst the few in life, who never got a chance to sin. She plays everyday in heaven. I hope you have been consoled by the Holy Spirit of Almighty God. They say you get thru it, but not over it. How are you doing? You are in my prayers.
Stand up for your organic self!
Thruday if she crys. Thrusday im pay bank. Get her she prays to god only. Crys
The best 💪
Rare blood disease ?
Rare skin condition.
🤤 P R O M O S M
R.I.P. kleine Lady
So sad for you.
I have two first cousins that died of that when they were infants one was born alive and one was still born that was back in the 1950s at that time they called him blister babies very very sad and tragic
RIP sweet angel
Amazing young intelligent girl.Also well done Johnny amazing Rugby player.
Eu o admiro muito, é uma pessoa maravilhosa , sensível e tem muita empatia com as pessoas , além de ser um excelente ator ❤
What a delightful young lady
2 amazing strong people
Nyatakan matlamat dan perlukan wang
**I was diagnosed with a skin condition known as Atopic Dermatitis (Eczema),,,, ,,,,. .... But thanks to Dr Eromon on RUclips,,, ,,, ,,,, the stains on my skin are Totally Gone now, So Greatful....... ..... ..........
Oh sweety ...
A lot of sun emanates from your voice and your smile. Thanks to talk about who you are. You seem to be a great person, Claudia ! From a french girl with ebdm
ruclips.net/video/bMFYWs6dLy0/видео.html
👍
I love this man so much 😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍😍
God be with her. ❤️
I love this man so much and every time 🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰🥰
Rock Dean Alva Live Xx
I watched and listened to the absolutely beautiful Claudia Scanlon on the Late Late Show 💓 What an amazing young woman she is. I wish her and her mum all the love, health and happiness in the world 💞 and I hope that someday Claudia will be the Make Up artist she so wishes for and I bet she'll make an amazing one... 💗
i love you vol💖💖💖💖💖💖
she goes to my school, and is around 1-2 years older than me.
Good on them for doing this!
What a lovely girl God bless her.
nice one dear
What is EB?
I'd like to know as well
@@bizarelli7695 Epidermolysis bullosa. It's a genetic condition where the person's skin is "fragile like a butterfly's wing" and tears or blisters at the slightest touch.
Unjustified disease; God help those children 👶💔
I just came looking for an EB Ford Falcon....
Happy birthday Emma, you are a strong woman
Salaam Emma! From Turkey sending love and all the best! You do not know how you give life to souls that are numb or lost. Famous should work hard in order to get people know special people like Emma, with the character and courage. Great inspiration I appreciate it. Happy Birthday! And many with great memories!
💖
Is she OK, xxxxx god love her ❤️❤️❤️❤️❤️
@Sarah Redmond Thanks for the comment It's me now and I'm doing well!!!
Strongest woman in Ireland
I have EB also and i know how it feels
😢 You poor pet
<3
Well done Michael and the girls he is not a ban man just tell things as the are as I do but lots of people don’t like the truth
Oh dear God 😪 the suffering she has to endure. Good luck on the challenge Joanne and crew xx
A princess in my eyes, and will always be a princess forever
Claudia, this is really great news and I want to wish you the very best for your first time doing the Women's Mini Marathon, it'll be a very special one for us all this year, knowing you'll be joining us. God bless and take care of yourself, love Mary xx
i love this man so much
My heart breaks for these poor children that suffer from EB
Great work Claudia, continue to be strong and chase your dreams.
She's a great interviewer!
Really good interview
Two very nice people