I joined Action Duchenne in 2007 having been encouraged to reply to the advert by my son who was living with Duchenne. Just the job for me I thought at the time, put my wealth of experience as part of a Duchenne family to good use. Along the way, I've experienced the services, good and bad that includes schooling, house adaptations, social care, care packages, hospitals, dietitians, physiotherapists, hydrotherapy, wheelchairs, going on holiday, attending college and going to university. A lot of the services I've had to fight for.

I've had the opportunity to see clinical trials become a reality and to give hope for the future when 20 years ago there was none. I've met some amazing families who have wonderful stories to tell in their quest to overcome Duchenne.  

In 2016 I qualified as a EUPATI fellow, to empower patients with a better understanding of their condition and the drug development process. Following on from that I've recently added the role as advocate. 

In between the tears there is fun and laughter. I'm here with the Action Duchenne team to help you and together we will find better treatments.