In October 2013, Harry Styles tweeted his butterfly tattoo with the following message, “I released my butterfly for EB Awareness Day. Join me.” 180,000 retweets later, EB Awareness Week was born. We asked DEBRA staff why EB Awareness Week is so important…


Jimmy Fearon- CEO DEBRA Ireland

The stigma of living with EB is a major issue and EB Awareness Week helps to reduce this. Last year after EB Awareness Week one family member said that she felt that her community finally connected with her because they began to understand what living with EB is like.


Judith Gilsenan – Head of Marketing and Fundraising

EB Awareness Week is exciting, eventful and always surprising! It’s nerve wracking worrying whether people will support but year after year we are blown away by the effort that’s made, often by individuals who have no connection to EB in their family but who truly connect with EB in their hearts.

People should get involved because if not us, then who? And if not now, then when?

The really big difference – and the thing that gives me the biggest joy is how proud EB families are to take part. Then we know we’re getting it right. And when those posters and tattoos really get out there – particularly in a small place, you can see the power of community, properly getting behind and showing support.

 

Claire Concannon – Corporate Fundraising Manager

EB Week 2018 was my first in DEBRA Ireland and I was delighted to see so many great companies get on board with EB Week, and really spread the message far and wide. Firstly, Applegreen deserve a big mention. With their help we can distribute tattoo’s all over Ireland. With posters in forecourts all over Ireland Applegreen really allowed us to reach all their customers.

Mastercard Ireland joined Team DEBRA for EB Week in 2018 by undertaking an on street collection on Grafton Street.

And on top of all that, The Body Shop offered henna butterfly tattoos throughout the week in all 10 of their Irish stores.

Companies can make a real difference! There are so many ways your company can support EB week – By educating your staff, your customers and your suppliers, you can spread the word much faster.

To join TEAM DEBRA, call me on 01 412 6924 or email Claire.concannon@debraireland.org.

Fiona Aherne – Advocacy and Policy Manager

Being a rare condition, EB can often be forgotten about in the sea of more common conditions. Dedicating an entire week to this awareness campaign gives everyone, including Ireland’s politicians, time to reflect on the needs of families living with this rare condition and listen to the potential solutions DEBRA has to offer in the form of HSE funded nurses and adequate care packages.

“EB Week recognises the sheer bravery and resilience of patients living with EB.” 

It gives us the chance to highlight the lack of awareness and therefore the gap in service provision among Ireland’s leaders and policy makers.

It has made us as an organisation more visible which in turn has given a platform to the most important beneficiaries, the patients and families fighting this disease.

By getting involved, the general public can continue to spread awareness. Without awareness there is no action and without action there is no hope.

Sinead Hickey – Research Manager

Research  into treatments for EB is expensive and takes time. DEBRA Ireland is trying to fund some of this research but can’t without the help of donors. EB Week raises awareness of EB and the research being performed in the hope that more people will support it enabling us to find better treatments sooner.

Knowing there are other people out there fighting for our cause – researchers, clinicians, nurses and the support from the general public especially during EB Week always amazes me.

Deirdre Callis – Family Support Manager

The highlight of EB Awareness Week for me is to focus on one incredible important message for families living with EB – “ SEE ME, NOT EB”.

The hope  is that more people will know about EB than before to help reduce the stigma that families living with EB face on a daily basis.

“EB does not discriminate – so anyone of us can be carrying the gene for EB and not know about it.”

It means we are breaking down the barriers of what people’s perceptions of EB is. For example it is not contagious – you cannot catch EB. This perception led to people living with EB feeling isolated and not included for fear that someone might catch EB from them. And sadly this perception still exits; so educating the public on factors like this has such positive impact on families.

Having a week where our main objective is awarenes gives us the opportunity to communicate the same strong message of SEE ME, NOT EB.  It is such a vital message for all families (especially those living with a rare genetic condition like EB) to not be defined by EB or any disability. And the only way to continue to do this is by educating people.

Helping to raise awareness of EB or other disabilities feeds into the much bigger picture of acknowledging that despite how we are born or if we are born with a disability that we all just want to be treated with love and respect and have our basic needs met.

When those needs are not met because of disability DEBRA Ireland aims to provide those services bridging those gaps where possible.  With less than 2 % government funding – our service rely solely on the generosity of the public i.e. me and you.

To get involved in this year’s EB Awareness Week, please visit here

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