Story

Insight and Goal:

Hi everyone back again ☺️👋

Please come help and support the children and adults of Ireland that suffer from EB 🦋

In 2020 we set out on a challenge to do a half marathon across the world, only for it to go ahead and with great success, raised a lot of money for Debra Ireland. We wouldn't have been able achieve what we did without all the great support and shear dedication from all the friends and family that were involved.

Although covid lockdowns and strict lockdown rules are a thing of the past, the impact they had and are still having on the care and help that is required for a person with EB not ok, help is needed !!

The care and personnel are spread thin and the families affected by EB and that need external assistant (PA) don't know if someone will come to the door from one day to the next.

The families go through enough on a day to day! They shouldn't have to worry about these things! I'm sure this is across the board with the charities all around the globe, but we can do are part here and now. Bit by bit from events like these and people like you all.

Join us if you dare, if not help us help Debra Ireland and raise money and spread awareness of this disease 😊💙🦋

So, what next ......

A small group of friends and family travelling to South Africa to trek Kilimanjaro in aid of Debra Ireland and for the people that suffer from EB. Debra Ireland may be a small charity but its impact on the world is ever so growing, and we are hopeful in are quest to help them further.

We hope to do so in April next year (exact dates to be determined - more info to come)

Please share this to all your family and friends and don't be afraid to contact me if your interested.

***All the money we raise will go straight to Debra Ireland***

What does Debra Ireland do and why does it exist ?

DEBRA Ireland is a national Irish charity, established to provide support services to patients and families living with the debilitating skin condition epidermolysis bullosa (EB). We also drive research into treatments and cures for those living with the condition. We were established in 1988 by the patients and families of those living with EB . Our patient focus has never changed since then and is reflected by the fact that patient family representatives continue to sit on our Board and their opinions inform our decisions both in terms of how we raise money and how we spend it. We provide hope and support to those living with EB, there are currently 300 people living in Ireland living with the condition. DEBRA Ireland provides support not only to them but to their families who regularly act as carers. Meet some of the people Debra Ireland helped here

Motivation:

Aaron the character that he was spite the condition he was in his whole life (EB) was the heart and glue of our family and still is, even after he pasted away many years ago. Being young when he passed i missed out on getting to know Aaron at a mature level and didn't get to fully connect with Aaron, i feel now through Debra Ireland and events such as this i can connect with him but through a different medium . Proving to Aaron in a way that i still look up to him and even after he is gone he still influences my life and the life of others around me.

Most of my close family and friends know my family story or Aarons story, and it was these people that brought this fundraising project to life. We wanted a way to all stay connected even despite thousands of miles apart. I myself cant think of a better way to stay connected and do such a task for such a good cause.

For those that would like to know more about Aaron please take 5 minutes to read Aaron's Story.

Help needed:

If any would like to participate feel free to contact me or any advocate that is helping raise money. Better again join the team. You can create and independent fundraising page on JustGiving and i can add your page to the team (community).

Spread the word !!