Category: General

CHSW Teen Event

BY MITCH COLES On the weekend I was at Children’s Hospice South West’s Charlton Farm again, after being there in the summer to talk to them about what we can offer. This time we were there as part of their weekend teen event activities. They were having an I’m A Celebrity… Get Me Out Of… Read more »

GameChangers

BY MITCH COLES On the weekend, me and my PA’s went all the way to Cheshire to visit the NeuroMuscular Centre to represent Pathfinders. We were there for NMC GameChangers Fest, an event to gear up for their 30th Anniversary next year and highlight the younger generation. The NMC is somewhere I’ve always to visit… Read more »

Monthly Roundup September 2019

board game night October 26th 2019 Chance and Counters 20 Christmas Steps, BS1 5BS Bristol, United Kingdom

Welcome to our Monthly Roundup September 2019. Autumn and Health Autumn has hit rather quickly, with temperatures dropping and lots of rain!  Cold weather isn’t great for us with Duchenne.  Extra layers mean it takes a lot longer to be dressed and once outside we can get cold very quickly.  Driving a wheelchair with numb… Read more »

Social Saturday

BY MITCH COLES Last week, Jon and I travelled to Helen House in Oxford, where we met with Youth and Transition Worker Emma Jordan and a group of 17 and 18-year-olds with Duchenne. After almost running out of fuel on the way, I made it on time (I was actually early!), even if I did… Read more »

Monthly Roundup August 2019

Sanjeev watching the Foo Fighters

Here’s our Monthly Roundup August 2019, better late than never! Summer seems to be winding down and here at DMD Pathfinders we are starting to look at upcoming events we are involved with.  We hope to hold some sessions at the Action Duchenne International conference again this year.  Next month we’ll be heading to Helen House… Read more »

Why slowing down progression of DMD is so important

BY JON REY-HASTIE We recently wrote a letter supporting the extension of ataluren/translarna to people with DMD who are no longer ambulant (with no upper age limit). The letter also has relevance to other treatments being developed to treat Duchenne: Losing the ability to walk is often considered the major milestone of Duchenne Muscular Dystrophy… Read more »

Trip to Majorca

BY MITCH COLES I’ve just got back from a very relaxing 4 night stay in Majorca. I took 2 friends / carers away with me to a pretty posh hotel and we were all well looked after. We stayed at the Ferrer Concord hotel in Can Picafort. It was about an hour from Palma airport… Read more »

Monthly Roundup July 2019

social meetup flyer 31/8/19? Come have a drink with us at @No1Harbourside

We hope you are all enjoying the sunshine and summer in general, this time of year personally makes me want to get out and do more!  First up this month is a catch up from DMD Pathfinders chair, Mark Chapman. Mark’s Catch up (written by Mark Chapman, Chair of DMD Pathfinders) I started this month… Read more »

Working with Hospices: My Visit to Children’s Hospice South West

BY MITCH COLES When I first started in my role as Development Worker at Pathfinders, I was asked to highlight some people and organisations who we could possibly work with in the future. Straight away I thought of a charity that means the world to me, Children’s Hospice South West. From the age of seven,… Read more »

Monthly Roundup June 2019

Mark Chapman sitting between Shelley Simmonds CEO of Action Duchenne and their Scottish Advocacy officer, John Miller

A busy month again for us here at DMD Pathfinders, apologies for not getting this out sooner  but I have had care issues (a common thing for us with Duchenne) and various personal things to deal with.  Enough about me for now though, let’s get on with the roundup. Our games night was great fun… Read more »