I have forgotten the last time I wrote a blog entry, it’s been a while but it feels good to have the opportunity after a busy second year at university. It is important that amongst the busyness to have time to relax, so the summer break has been welcomed!

Internship at Action Duchenne

For the last few weeks I have been working at Action Duchenne, content writing for their new website. Specifically I have been giving an overview of Duchenne muscular dystrophy (DMD), from the genetics and inheritance of DMD, the signs and symptoms of DMD and describing the clinical trial process.

I have enjoyed working at the charity, getting to know the team at Action Duchenne and how they operate, working to find a cure for DMD and improve the lives of those with the condition.

This experience has clarified to me that I wish to pursue a career in science communication, with the placement opening my eyes to one aspect of this field of work. In life it is experiences like these that provide a sense of clarity and direction.

Learning to DJ

It is important in life to do things that give you Joy, to have a hobby, so recently I have invested in learning how to DJ. This is for fun mostly; everyone’s a DJ nowadays! I have wanted to DJ for a while, so it has been good to have a go whilst I have time, music being something that will always be with me.

As someone with DMD it is hard to find sports to get involved in, due to loss of muscle strength, with it being important to not over work the muscles as to not cause damage. But there are sports out there, with sailing coming up as a really accessible sport that could adapt around my needs, so I thought I would give it a go!

Sailability scheme

I have started to sail through the sailability scheme at Frensham pond sailing club, who have been very accommodating and friendly, with a team of dedicated volunteers. Sailability enables individuals with physical difficulties to engage with and partake in sailing.

I have been on the water about five times now, including for a taster session whilst I was at university. It feels good to be out on the water with a real sense of freedom and is a great way to focus, relax and most importantly have fun.

Employing Personal Assistants

With all these activities I am getting involved in, I have started looking into employing my own personal assistants (PA’s). Whilst I do not need a lot of major support, it is the small things I increasingly need help with. By employing my own PA’s it will give me a greater sense of freedom, particularly on trips or if I want go away for the weekend or out in an evening. It will enable me to not have to rely on friends or family, particularly my mum who has always been there to support me.

Parallel London 2017

On 3 September I will be taking part in Parallel London. I will be taking part in a 10km walk, walking half (5km) and being pushed in a manual wheelchair for the remaining distance (by my lovely mother!).

This will be a challenge for me despite having DMD I am still walking at 20 which is truly amazing!

I will be raising money for Action Duchenne and it would be great if you could spare a couple of quid and support this fantastic cause, it would be much appreciated!

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