Blog

Fundraising to fight Duchenne

by Jon Hastie A NIGHT OUT WITH PURPOSE   Last night I attended a fundraising event run by Duchenne UK, a charity we are pleased to partner with. It was a very well organised event which attracted some major donors and when the money is all counted is expected to raise a substantial amount to Read More …

Adults access treatment to slow respiratory decline

It’s fantastic to see young adults with DMD are now accessing Raxone, a brand new treatment to slow down respiratory decline. This is happening through the Early Access to Medicines Scheme at participating hospitals. Hopefully the first of many treatments adults will be able to access. For full details please read the press release from Read More …

DMD research didn’t interest me – but now it does!

BY JON HASTIE CEO of DMD Pathfinders   As an adult with DMD I have seen many posts about DMD research over the course of my life. I remember when the dystrophin gene was discovered in 1986 and it was hoped that a cure was just around the corner. While progress has been amazing, it Read More …

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 …