Dr. Avril Kennan has a PhD in human genetics. She tells Smart Futures about her research and advocacy work for the charity Debra Ireland.
What is Epidermolysis Bullosa (EB) and what research is happening?
EB is where the layers of the skin are not properly attached to each other. In severe forms, it can occur in the internal lining (such as the mouth and intestines). Any knock to the skin results in a blister. We’re involved in aspects of research worldwide. In particular, there is a gene therapy research programme in the Charles Institute of Dermatology in UCD.
What is advocacy?
Advocacy is working on behalf of others to improve their situation. For people with EB, it might be working to improve health entitlements, clinical care or research.
Describe your typical day?
Every day is different. Most of my time is spent talking to and supporting people. This includes getting researchers from around the world together as well as linking them with someone who could help commercialise a therapy they have in development.
What advice would you give to someone considering this job?
My PhD has been invaluable and is the toolkit that I draw on. Day-to-day in the job, you need to really like people. You also have to be a bit of an activist at heart as you’re fighting on behalf of other people every day. My science background is very useful in helping me to explain research developments to patients and their families. Understanding both the science and the patient perspective allows me to effectively act as a translator between the scientists and the people they work so hard to develop therapies for.
What subjects did you take in school?
I did biology in school and it was my passion. I didn’t do physics, chemistry or higher level maths, which I needed when I started my science degree. I had to overcome that but I managed. What did you do after school? I completed a degree in microbiology in NUI Galway and a PhD in human genetics in Trinity College Dublin. Then I spent eight years working in a genetics lab in Trinity.
What advice would you give to someone considering this job?
My PhD has been invaluable and you need to really like people. You have to be a bit of an activist as you’re fighting on behalf of others. My science background helps me explain research developments to patients and their families.
What’s cool about your job?
Working for people who have among the most challenging lives on the planet.
What are the main challenges?
Wanting things to happen faster, and a lack of resources and money.
What do you wish someone had told you before you started out?
I wish someone had advised me to move from science in a lab to being a patient advocate in a medical research charity sooner. This role brings me into contact with so many exceptional people and is more varied than lab science. It allows me to use everything I learned to help patients in a very direct way.
Smart Futures
