It's not only about funding: December 2011

Dear ,

As 2011 draws to a close, a final update from DEBRA Ireland. At the risk of sounding like a cliché, it has genuinely been an incredibly busy and, I believe, very productive year for us. We hope to continue momentum on lots of different fronts next year and in the accompanying video I talk about how, as well as funding research, DEBRA needs to do so much more, to get us to treatments for EB. I hope to meet you over the coming year and wish you a very happy Christmas.

Best wishes,

Avril

Click here to watch the video

A big boost for skin research in Ireland

When the City of Dublin Skin and Cancer Hospital closed its doors in 2006, and sold its Hume Street premises on the eve of the economic crash, it made a substantial profit and showed a surplus in its accounts, for only the second time in its 100 year existence. Fortunately for the many people in Ireland who live with a skin condition, the Board of the hospital was populated by people with real vision. Those individuals took action to ensure that the profits from the sale would be used to continue the original aim of the hospital; to improve the care of dermatology patients.

That vision is now becoming a reality, most obviously so in the beautiful new Charles Institute of Dermatology in UCD. The Charles Institute will host up to 50 researchers and is set to become a world leader in skin research and in the training of dermatology healthcare professionals.  We would like to welcome the new Director of the Institute, Professor Wolf Henning Boehncke, to Ireland and congratulate him on his appointment.

We are very excited about the Charles, about the inspired thinking behind it and about its potential for the future and, naturally, we have been considering how it might benefit our EB families. We are delighted that our own Chairman, Colm Darling, has been invited to join the Board of the Charles and we are in on-going discussion with other members of the Board, Prof. Boehncke and UCD representatives to investigate the possibilities for EB research at the Institute. We’ll keep you posted…

Latest news on protein replacement therapy

I recently interviewed Mark de Souza from Lotus Tissue Repair on the plans for the potential protein replacement therapy for the dystrophic form of EB. Click here to watch the short interview.

€3 million in funding for the best EB research

DEBRA Austria has recently put up €3 million in competitive funding for EB research projects – the largest single pot of research funding provided by a DEBRA organisation to date. This funding is being managed by DEBRA International who has alerted EB researchers around the world to a ‘call’ for research proposals. The many initial applications have already been reduced to a shortlist and those lucky enough to have made the shortlist will be rigorously assessed to determine their quality, their likelihood of success and their value to EB patients.

So what exactly will the assessment process take into consideration? Critically, this particular funding insists that applicants join forces with other EB researcher groups – a clever way to encourage the best minds to work together. It also insists that the research focuses on a severe form of EB and that its purpose will be to progress a potential therapy.

After that, it all comes down to ‘the x-factor’! This is a very substantial amount of money and any proposal considered for it needs to be a very special one. The decision will be made in mid 2012 and we will let you know the outcome.

For more information see the DEBRA International website.