September - 2017

AMO Pharma: Encouraging Phase II Results for Congenital and Juvenile Myotonic Trial.

AMO Pharma has announced results from its ongoing phase II study investigating two doses of tideglusib (AMO-02) in adults with congenital and juvenile onset myotonic dystrophy. The subjects had an average age of 22 years – six of whom had congenital-onset myotonic dystrophy – and they underwent once daily oral treatment with 1000mg AMO-02. The results showed that treatment was generally safe and well tolerated, and no subjects discontinued treatment due to adverse events or o

Visibility is Not Inclusion

I’ve learned a lot over the years. Perhaps the hardest lesson is that visibility of disabled people has never equalled inclusion. I’m a person immersed in a minority community. From disabled people themselves to their parents and guardians, we all seek one thing – to be included in society. I think that is the same for all minority groups. We do not seek special treatment, to be elevated above others. We simply seek to be able to live our lives as true, fully included members

Muscle Owl Talks Ep69: No Wheelchair on the First Day of School?!

Today is World Duchenne Awareness Day. It was also 4 year old Fraser's first day of school! However Fraser - who unlike many with DMD, has never been able to walk - has been refused a motorised wheelchair by the NHS in England, and has been left with no autonomy in his manual chair. We discuss the situation with Fraser's mother, our good friend, Shelley. And we raise the very concerning normalisation of people having to fund their own wheelchairs. #wheelchair #Disability #mus

Muscle Owl Talks Ep68: World Duchenne Awareness Day with Jon Hastie

Tune in to the first of our two special episodes for World Duchenne Awareness Day! We are joined by our friend and regular guest Jon Hastie, who is 36 and has Duchenne muscular dystrophy. This year's theme is DREAMS, so we discuss how young people with Duchenne muscular dystrophy can overcome any obstacles, plan out, and effectively accomplish their dreams! Jon himself has a Phd and runs his own charity DMD Pathfinders!

World Duchenne Awareness Day 2017 - Our Community's Balloons!

It’s World Duchenne Awareness Day 2017! Here is our annual Duchenne Awareness Day animation, featuring facts about the condition, and ALL the balloons we have created for the community through the last few weeks! Can you see the balloon of anyone you know?! Let’s share, raise some awareness, and get people talking about DMD! #duchenne #worldduchenneawarenessday #wdad17 #musculardystrophy #animation

Muscle Owl Talks Ep67: Duchenne - Just Children?

Duchenne muscular dystrophy.... A childhood condition? After reading a number of posts from around the community, Peter and Vivek respond with their thoughts. How do you think muscular dystrophies should be communicated? Is it fair to a condition to focus on certain age groups? Is it misleading to focus on children with Duchenne when as many adults have the condition? Share your thoughts with us! #vivekgohil #peterduffy #Duchenne #dmd #musculardystrophy #muscleowltalks