Blog

My Australian Adventure: Diary of a Duchenne Warrior Part 3

In January, DMD Pathfinders trustee Mithun Soul fulfilled one of his big ambitions to return to Australia.  In this third blog, Mithun shares his holiday snaps. My Australia holiday, part three           What can I say about the holiday guys, it was hectic!  It took a day to get there with my feet swollen, butt slightly sore, absolutely knackered Read More …

My experiences in Job searching

DMD Pathfinders volunteer Sam Bailey shares his experience of looking for employment and volunteering as a young adult living with DMD.   What I Originally wanted to do?   Before I did IT at college and began volunteering I had many interests and ideas for my future. The Secondary school had a career advisor so I Read More …

My Australian Adventure: Diary of a Duchenne Warrior Part 2

In January, DMD Pathfinders trustee Mithun Soul fulfilled one of his big ambitions to return to Australia.  In this second blog, Mithun talks about flying to Australia as an adult with DMD. Australia – the flight! BY MITHUN SOUL The flight to Australia wasn’t that confortable, the first 3 hours was a bit manageable the rest Read More …

My Australian Adventure: Diary of a Duchenne Warrior

In January, DMD Pathfinders trustee Mithun Soul fulfilled one of his big ambitions to return to Australia.  Not an easy task for any older adult living with DMD dependent on ventilation and a huge range of equipment.  In the first instalment of a 4-part blog, Mithun tells us how he did it. Australia – the return! Read More …

Assistive Technology: GlassOuse

Recently I’ve been searching for assistive tech to enable me to use my computer/track pad more efficiently with the least effort. In the past, I could manage to type quickly with my fingers but I now use an onscreen keyboard that is still slow. So last week Steve O’Connor a Senior Assistive Technology Engineer from Read More …

Uncanny Vivek on January: Nutrition

By Vivek Gohil Welcome to January, The month of insipid dieting adverts, Goji Berries or Joe Wick clones on Youtube. Receiving the right nutrition through a healthy balanced diet is an essential part of caring for your body. Nutrition is not only related to eating but also with the mechanical processes involved. Currently I’m confronted Read More …

While my muscles get weaker, I only get stronger

By Sam Bailey: I’ve recently joined DMD Pathfinders as a volunteer and my first piece of work I was tasked with was creating a blog about myself. My name is Sam Bailey and I’m a 19 year old living with Duchenne Muscular Dystrophy.  Duchenne Muscular Dystrophy (DMD), is a condition that wastes away muscle and when Read More …

Duchenne Charities launch campaign for treatments for Adults with DMD

  Thursday, 12th January, 2017.   Duchenne UK and DMD Pathfinders are delighted to announce the launch of a joint campaign to ensure that treatments and therapies developed for Duchenne muscular dystrophy (DMD) are relevant and available to adults living with the condition as well as children.   The campaign, to be spearheaded by DMD Read More …

DMD Pathfinder Trustee Mithun Soul’s journey to DMD Pathfinders

  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 Read More …

Into The Future

Into the Future Posted on September 19, 2016 After attending the DMD pathfinder’s leadership camp over the weekend I have returned home feeling empowered. Empowered to move forward, empowered to make a change in my life and the lives of others affected and not affected by DMD. DMD pathfinders is a user-led charity, run for Read More …