This was my first year attending the Action Duchenne Conference 2016 at the London Hilton Metropole Hotel, which was held in conjunction with the user-led charity DMD Pathfinders founded by Jon Hastie and Mark Chapman.
The Action Duchenne Conference was a empowering experience, Duchenne is such a rare disease but with 20 people with the condition in the room I felt part of a huge family with a collective interest. Through DMD Pathfinders it also managed to bridge the large divide between the parents of newly diagnosed, teenagers and adults living with DMD. Adults living with DMD are typically overlooked due to the prominence of genetic or drug research to find a cure or medication. This concern is particularly important now that medical advances have increased our lifespans, however our quality-of-life has to match up.
Angela Stringer organized all hotel rooms, hoist rentals, electric bed rentals for everybody. The medium sized rooms in the Hilton were accessible along with the bathrooms, usually hotels don’t provide enough plug sockets but this room did. The gala dinner on Friday night was fantastic especially meeting the new Action Duchenne patron Harry Hill (although it was difficult to take him seriously).
In my opinion, Jon Hastie & Mark Chapman are the leaders of Duchenne, they have so much knowledge about living fulfilled lives and have shared their experiences to encourage younger generations to fulfill their dreams or goals. I was speaking to Jon Hastie about how meeting Mark Chapman inspired him to live independently, the funny part is that Jon inspired me to stop limiting myself and take back control of my future.
DMD Pathfinders’ workshops explored how ventilation and nutrition is a vital but an unexplored part of DMD care, when swallowing becomes difficult how do you maintain a balanced nutritious diet. Both ventilation and nutrition work together to provide us with the energy to live our lives. Jon Hastie emphasised how necessary it is to take responsibility of your DMD, to understand your body and realise that you are the true professional. The workshop about employing carers that are not your parents was useful, it made me realise that carers are essential to give my Mum a break and create a backup plan for all future possibilities. What I liked was that Jon said that you don’t need to do it all at once as they are big decisions to make.
This conference gave me a chance to meet my friend Peter Duffy from the Muscle Owl and the CEO of Limitless Travel Angus Drummond and his wife Lucy. Limitless Travel aims to remove the hassle and stress for disabled people when planning a holiday. Joining them has motivated me to improve my skills on social media and to regularly blog. In February, I’m hopefully on a apprenticeship for where I can educate myself on the business side of the company. Limitless Travel has shown me that holidays are possible without having to plan everything. I tried my best to network for them so hopefully I managed to spread enough awareness. One new friend Ronak was speaking to Angus about attending Gamescom 2017 in Cologne, Germany, which I’d definitely join him on!
Leaving the conference has left me a profound feeling that Jon and Mark have removed the limitations I placed on myself, creating those future opportunities I never imagined were possible like employment or relationships. This is truly why DMD Pathfinders was formed to provide peer support and empowerment. Thank you DMD Pathfinders & Action Duchenne.
Uncanny Vivek 