Action Duchenne 2014 Conference – Review


My first thoughts regarding the Action Duchenne 2014 conference are that there is more than research and science to discuss. The human side was so positive and hearing about the stories and successes of some of the youngsters was fascinating. As a young person with Duchenne I believe life is always about quality and not quantity.

It was highly important to understand what can be achieved for disabled people despite their difficult circumstances. Going to University, driving a car or setting up your own charity can all be possible. Anyway, everyone has the right to fulfil their lives with opportunities and experiences like these. Being enthusiastic and dedicated is important though.

Youngsters and parents alike were motivated and inspired throughout the two days, with a variety of talks and information given about the achievements of some of the individuals. It was a privilege for me to share my experiences on the disability empowerment program in Oregon, USA I completed back in the summer and work experience stints at local Newspaper offices. To take part in a variety of adapted, inclusive cultural activities in the US was fantastic but it would have been pointless if I had nobody to share it with. Hopefully I have encouraged the young adults and children form up and down the country to just give things a go. I came back from the trip a more well rounded and independent individual and have not looked back since.

Some of the youngsters will hopefully be able to feel their future can be bright. Obviously the condition is progressive but that progression can be in the personal achievement sense. The achievements do not have to be spectacular with fireworks and can be big or small. But, the main thing I wanted people to take on board was that you have as much chance of achieving things as anyone else.

During the conference it may have been quite frustrating to hear about the slow advancements for finding a cure for the condition. This is obviously the end goal but for now youngsters with Duchenne are living for longer and there are more opportunities available then ever before.

Emphasising these two elements; the improving lives and ranges of opportunities out there for those with Duchenne was key to a successful conference. The science and research may be on a similar level since the last time, several years ago, I came to the conference. However, there are more and better medically assistive technologies available now to help slow down the progression of the condition.

Personally, it was a pleasure and an honour for me to represent the youngsters with my condition at the conference. In a year’s time I expect youngsters will have a lot more inspiring stories to share.


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