Blog

Going Danish – The Musholm Experience (part 2)

….continued from part 1 The Muskelsvindfonden meeting moved onto showing the fundraising activities for the past year and how those funds were spent. A lot of funding is raised from their involvement in a series of rock concerts, the most recent being Grøn Koncert 2017. A large proportion of funds appear to be spent on care and support Read More …

Going Danish – My Musholm Experience

BY MARK CHAPMAN, CHAIR OF DMD PATHFINDERS Welcome to Musholm!  A number of years ago a team of professionals and consultants from Scotland who support individuals living with Duchenne and similar conditions visited Muskelsvindfonden (the Danish Muscular Dystrophy organisation) in Denmark and published a report on the impact of their good support. Janet Hoskin (the researcher from Read More …

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 …