Searching for a cure, Improving lives
Our friends at DMD Pathfinders have produced a 7 page guide on worry free breathing for people with Duchenne during a power failure. You can download the guide by going here. DMD Pathfinders said: ‘There are occasions where power failure has led to loss of life for people with muscular dystrophy who use respiratory equipment. DMD Pathfinders
In 2010, Action Duchenne supported an initiative called Pilot Trials Now, the first drug development initiative led by global parent-led organisations. Part of this initiative was an early phase I trial investigating Sildenafil, REVERSE DBMD (Revatio for Heart Disease in Duchenne and Becker Muscular Dystrophy) to investigate the efficacy and safety of sidenafil in treating
Action Duchenne have teamed up with the Care and Trial Site Registry (CTSR), a registry that was established by TREAT-NMD to collect information about care settings and trial site infrastructure in neuromuscular centres around the world. If you work at a centre, kindly fill out (or update your answers to) the standard questions in the CTSR plus the extra page explicitly for Action Duchenne.
To access the Care and Trial Site Registry, please click below and sign in, if you are already registered. Otherwise, please sign up for a new account.
Please go through the questionnaire from top to bottom and answer all the questions (be sure to check the Disease Group ‘NMD’, or you will not see all the questions). The pages under ‘Clinical trial infrastructure’ need only be filled out if you are interested in participating in clinical trials.Fill in the survey
One year today our 21 riders (so far) will be beginning the Land’s End to John O’Groat’s 2015 Challenge; cycling nearly a 1000 miles for Action..
We would like to wish all the members of Team Leon the best of luck on Saturday when around 50 brave people will take part in a firewalk on behalf..