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Meet DEBRA International’s new President, Mike Jaega from DEBRA UK

Meet DEBRA International’s new President, Mike Jaega from DEBRA UK

A Q&A with DEBRA International’s recently-elected President

What’s your role as President of DEBRA International?
As President of DEBRA International, it’s my job to help shape the long term priorities and strategic vision of the charity, making sure the views of the DEBRA International Executive Committee, which is made up of representatives from national DEBRA groups, are represented.

I’m thrilled to be taking on the role, especially as I’m (quite possibly) the first person with EB to do so. EB is always there to keep me focused on making decisions that will bring the most benefit to people living with the condition worldwide: you never lose sight of why you’re doing the job.

What would you like to achieve?
Developing relationships with biotech and pharmaceutical companies is a big priority for me. This is a key step towards making therapies for EB, now at clinical trial stage, widely available. We will be working hard to make DEBRA International the go-to source for any researcher or organisation looking to develop effective treatments for EB.

One of my passions is to promote the work of EB Without Borders (EBWB). This is one of the initiatives of which DEBRA International can be most proud. It educates, advises and assists families with EB and doctors in countries where there is very little or no access to affordable healthcare or there may not be a DEBRA group. By spreading awareness of EB in public and medical communities across the globe, it is helping people with EB everywhere access better care and support. We must never forget that EB can strike anyone in the world, any family in any situation and we have a global responsibility to help these people however we can. We'll also be doing all we can to facilitate closer working with medical professionals through networks like EB-CLINET, minimising the duplication of research and making it easier to share expert knowledge more widely.

Another of my objectives is to enable greater communication between national DEBRA groups and provide the resources to achieve a co-ordinated approach to EB awareness and fundraising campaigns. As with anything, a lot of teamwork is needed to make this happen, but with the backing of the executive committee and the support of national member groups like DEBRA UK, I have no doubt it’s possible.

You’re also Vice Chair of the Board of Trustees at DEBRA UK. How will this affect your new role as President of DEBRA International?
I think being a trustee of DEBRA UK will have a positive impact on my term as President of DEBRA International. It’s given me experience of chairing meetings, taking difficult decisions and networking with other people and organisations. Mentoring from and working alongside David Spence, Chair of DEBRA UK’s Board of Trustees, has also been invaluable to me. I've learnt so much. Without his support, I wouldn't be in a position to take on this role, though I still have my own way of working. I think it's important to keep that identity. As Vice Chair of the Board of Trustees for DEBRA UK, I love doing what I’m doing. I’m forever talking to my family and my girlfriend (who also has EB) about DEBRA’s work, the research it’s funding and what I’ve learned about charitable governance.

My ultimate aim, though, with the help of Liv Mullins, DEBRA International’s new Business Manager, is to help DEBRA International develop and further professionalise. That way we can better represent people with EB, learn, grow and be an extra force in the fight against the condition.

Mike Jaega, President, DEBRA International
Edited by Liv Mullins, Business Manager, DEBRA International

Mike Jaega is sixth from the left