Tag: DMD

Our Spirit of Giving Christmas Campaign

Support our Work this Christmas Tired of trying to find that perfect present for someone?  Why not gift your friends and family with something that could save lives and improve outcomes for young adults living with Duchenne. Choosing to make a donation to DMD Pathfinders this Christmas will help us with our vital work – supporting and transforming the Read More …

Action Duchenne Conference News

Mark and Jon presented a DMD Pathfinders workshop at The Action Duchenne 12th International Conference ‘From the Labs to the Clinic’ on the 8thNovember, 2014, in London. They joined Prof. Anita Simonds from the Royal Brompton in her session on Respiratory Research which ended in her highly recommending out new frequently asked questions guide on Ventilation and Read More …

Ventilation and Duchenne – our new guide is now available

We can now share with you our latest guide – Ventilation and Duchenne: Frequently Asked Questions. Click this link to download Ventilation and Duchenne. About this book The guide has been written following evidence gathered from 300 members of DMD Pathfinders. This told us about many differing practices and conflicting advice about the best respiratory practice Read More …

Disability and Sport

Disability and Sport In recent times sport for disabled people has grown especially after the paralympic games in London. So I have decided to bring you through a blog, the experiences of a disabled sportsmen. This week Robert Watson a trustee with Pathfinders has kindly written about his experience playing powerchair football. Robert Watson: I’ve always Read More …

Ventilation Guide

Recently we have been in the process of creating a ventilation guide for people with DMD of which most of it has been completed. This is written as a Frequently Asked Questions (FAQ) booklet. Within our charity we strive to ensure important information which could improve the lives of people mainly with DMD is available. Read More …

Life and Breath – Planning for power failure guide

Today we launch our new guide about worry free breathing during power failure – Life and Breath. Why we produced this 7 page guide / factsheet There are occasions where power failure has led to loss of life for people with muscular dystrophy who use respiratory equipment. DMD Pathfinders wanted to highlight the importance of a robust power failure safety Read More …

Life and Breath – Worry free breathing during power failure.

Members of DMD Pathfinders, and our global social network groups, have been deeply shocked and saddened this week by the deaths of Coner Murphy and and Kyle Scolari. A news article about their deaths can be viewed at http://www.news.com.au and across many other world news channels. A coroners report is being prepared to investigate the deaths. Loss Read More …