On Saturday I got back from the “Into the Future” Duchenne Leadership Camp, the first Leadership camp ran by us with Duchenne. It feels like yesterday, when I first joined the Action Duchenne’s Takin’ Charge project. It’s a unusual kind of a story really, it was like a great opportunity waiting to happen. I went to the Action Duchenne 10th International Conference in 2012 as a normal visitor, never did I know that I was about to join Action Duchenne’s Takin’ Charge Steering Committee.
I remember when I first met Janet Hoskin and I remember her asking my dad “Can I help you, what are you here for, I see you have a Takin’ Charge badge are you here for the Takin Charge project?”. Something along those lines anyway, me on the other hand was wondering what was happening in the next room and Janet Hoskin, was telling me that there was a Steering Committee meeting going on, I asked her if I could join and she said “you can come and have a look and see what you think?” and I was like ok.
I remember going into the room and I was introduced to the members, by a lady called Yasmin and we were having a group discussion on problems that we face or come across, something like that, but never did I know that the Co-founders of DMD Pathfinders were sitting in the same room and I remember complimenting them, how confident and clever Jon Hastie was and I remember my great friend Stuart Hatton, who sadly passed away last year, welcoming me to the Steering Committee and was glad that I had joined.
After the meeting, I went to some sessions and by the end of the conference I met the amazing Celine Barry, who has been there for me throughout the Takin’ Charge project, organising for me to come down to London and other amazing places over the years, she was like the mother to the project, I gave her my email and she said that she will be in touch, she also thanked me for joining the Steering Committee. After the conference I added Mark Chapman and Jon Hastie on Facebook and one of them tagged me in one of their posts.
Mark Chapman also added me to the DMD Pathfinders group and this is where my journey began with DMD Pathfinders, back then it was just a forum on Facebook. Today was quite emotional for me, it took me back to when Takin’ Charge first began and when I first met the guys that started it. Never did I ever think in a million years, sitting in that room in that conference that there would ever be a charity ran by us, living with the condition and its all thanks to the Takin’ Charge project and Jon Hastie and Mark Chapman for making this all happen, the guys did it!!!
They created the first user-led charity ran by Adults living with Duchenne, coming up with the ideas from the Takin’ Charge project, that they could run their own charity. I watched them grow, from even before they, were even registered as a charity, words can not describe how proud i am of both of them. Unfortunately the Takin’ Charge project has come to an end and we are the future for the Duchenne community, I am a Duchenne Pathfinder and a Trustee, representing Adults with Duchenne and together we are DMD Pathfinders!!!