Building partnerships for EB: September 2011

Dear ,

There have been some genuinely interesting developments in the world of EB research recently and we can see progress being made on a number of different fronts. This update includes a brief overview of some of those developments and outlines some of our recent activities.

Best wishes, Avril

For a short video update on recent research news click here.

The future of EB research discussed at Dublin meeting

At the start of this month DEBRA Ireland brought together key people from the research-focused DEBRA organisations from around the world, for a two-day meeting in Dublin. Attending were representatives from DEBRA International (the umbrella organisation for all the DEBRAs), DEBRA UK, DEBRA Spain and DEBRA USA. The purpose of the meeting was to discuss how we can work together to bring us closer to effective treatments for EB. In particular, we discussed the role that DEBRA International will play in facilitating the translation of research results into actual treatments. 

The meeting was intense, it challenged us all but it was very productive. We came away with plans for future meetings and a solid action list. We were particularly pleased to develop a relationship with the new CEO of DEBRA USA, Brett Kopelan. Brett has a 3-year old daughter with EB who has undergone the bone marrow transplant approach to treatment and so it was fascinating to get his personal insights on that and good to hear that she is doing well.

Visit from CEO of company who received $26M in funding

We invited Dr. Mark de Souza, CEO of the company Lotus Tissue Repair, who recently announced $26M in funding for the development of a treatment for EB, to join us in Dublin to discuss their plans for this treatment and how we might work together towards it. Mark has incredible experience in the area of drugs for rare conditions and is very driven and passionate. While no one can know yet whether this protein replacement therapy for dystrophic EB will be successful, we were all left with a sense of considerable optimism following our discussions with him. We are in on-going contact with him and will provide him with whatever support we can to ensure the success of their plans.

While he was here we arranged for Mark de Souza to do an interview for TV3 news, along with Liz Collins and little Claudia. Click here to watch.

Pharmaceutical giant develops interest in EB treatments

In June of this year Professor Irwin McClean, of the University of Dundee in Scotland, entered an agreement with the pharmaceutical giant GalaxoSmithKline (GSK) to develop treatments for recessive dystrophic EB. This collaboration will allow the combining of the drug discovery capabilities of GSK with Prof. McLean’s long-time expertise in EB research. The challenges of bringing a potential treatment from the lab, all the way through to market, are immense and many believe can only be done by collaboration with industry, making this agreement particularly welcome. We had the opportunity recently to discuss the development over dinner with Irwin and he feels that this partnership has incredible power and will bring a whole new level of productivity to his already very productive group.

Medical team, researchers and patient representatives swap stories...

DEBRA Ireland recently facilitated a meeting between the EB team at Our Ladie's Children's Hospital, the Galway EB research team and DEBRA ambassadors Emma Fogarty and Liz Collins. Thanks to all involved for giving their time and sharing their knowledge and perspectives.