In our Christmas email we told you about a fantastic charity called Duchenne Now. Every penny they collect is used to treat and run trials for those living with Duchenne. Instead of sending Christmas cards we donated £200 in order to help them with their work.
Thank you for your donation. We’re sending it straight to Duchenne Now so you’ll be making a difference very soon. A word from Duchenne Now Many thanks for your kind donation to Duchenne Now. Duchenne Now only funds research that has a clear road map to market to treat everybody living with Duchenne. Thank you so much for your support. Duchenne Now www.duchennenow.org
Here is some information for anyone interested in helping with this inspiration work:
Duchenne Now launched in March 2012.
What is Duchenne’s muscular dystrophy?
Duchenne’s muscular dystrophy (DMD) is a genetic
condition which affects the muscles, causing muscle
weakness. It is a serious condition which starts in early
childhood. The muscle weakness is mainly in the
‘proximal’ muscles, which are those near the trunk of
the body, around the hips and the shoulders. This means that fine movements, such as those using the hands and fingers, are less affected than movements like walking. The muscle weakness is not noticeable at birth, even though the child is born with the gene which causes it. The weakness develops gradually. It usually shows up in early childhood. Symptoms are mild at first, but increase as the child gets older.
DMD is a very serious condition and it does shorten life. Because the muscle weakness increases gradually over the years, complications eventually develop. The breathing or heart problems usually become more serious for older teenagers or people in their twenties. In the past, most people with DMD did not live beyond their early twenties.
Duchenne Now is a registered charity (charity number 1146355) dedicated to finding and funding treatments and eventual cure for ALL living with Duchenne.
They are dedicated to treating everyone with Duchenne and will only fund projects with a clear road map to market within a reasonable time frame; they need to quickly find, test and make available Intermediate treatments for all people living with Duchenne today, it is in our view a scandal that the only available treatment at the moment is steroids, this needs to change. We are convinced this can be achieved; together we can make viable intermediate treatments a reality for all.
Duchenne Now works closely with the business community promoting their ethos of where possible 100% of what is donated goes to treat and run trials for those living with Duchenne.