As they say, without awareness there is no funding, without funding there is no research and without research there is no cure. You could add to this that there would also be no possibility of improving EB services in the community and no understanding by the public of what it is like to live with EB. This is why you will frequently here the words ‘awareness’, ‘advocacy’ and ‘lobbying’ used in the DEBRA office.

Thanks to our dedicated and multi-tasking fundraising team and the support of many wonderful people who live with EB, this year’s EB Awareness week, in October, was our most successful to date.

Over the course of that week, our message reached:

• 5 million people through social media.
• Over 2 million people through national and regional newspapers.
• Almost 1 million people through Johnny Sexton’s appearance on the Late Late Show (watch Johnny talk about Liam Hagan and Emma Fogarty) and our appearance with Claudia and Mum Liz on TV3’s Ireland AM.

In parallel with raising public awareness, we have been persistently advocating with policy makers and politicians for improved services. Minister Finian McGrath, Senator Colm Burke, Deputy Billy Kelleher, Senator John Dolan and Senator Denis Landy have shown particular support for our campaigns and we will enthusiastically knock on their doors again in 2017.