Possibly supporting charities that fund research into Duchenne might help, perhaps getting on the research decision-making panel (if possible) to have a say in the direction of research, seeing what clinical trials might be available and perhaps raising the issue in Parliament (mostly to get news coverage I expect, rather than funding). It's also worth seeing what people are saying about the condition on social media, in terms of hearing about news and events.
According to the Charity Commission there are several Duchenne charities operating in England and Wales. Some provide patient & carer advice and support and some fund medical research. The ones highlighted fund research.
The ones I found are
1101971 ACTION DUCHENNE LIMITED Registered
328220 DUCHENNE FAMILY SUPPORT GROUP Removed
1120873 DUCHENNE MUSCULAR DYSTROPHY TRUST Registered
1146355 DUCHENNE NOW Registered
1147094 THE DUCHENNE CHILDREN'S TRUST Registered
1128653 THE DUCHENNE FAMILY SUPPORT GROUP Registered
1119068 THE DUCHENNE RESEARCH FUND Registered
Not sure what it means by the second one being 'removed' as their website still seems operational and has the charity number listed on its site.
- Action Duchenne: Website | Twitter
- Duchenne Muscular Dystrophy Trust: Website (incidentally, gorgeous creepy ambient music)
- Duchenne Now: Website
- The Duchenne Research Fund: Website
Both these websites have information on registered clinical trials - I don't know if there's a research network for Duchenne (in the same way that there are for cancer and diabetes). There's a Duchenne Alliance of a variety of Duchenne support groups though.
Who's mentioned it in Parliament?
There was an Early Day Motion back in July 2012 - Duchenne Muscular Dystrophy (No. 2) - about the showing of a film in the Atlee Room, the event seems to have been coordinated by Muscular Dystrophy Campaign and Action Duchenne.
This link will run a search for mentions of Duchenne:
Twitter: This link will return a list of tweets recently posted about Duchenne
Topsy is like a supercharged search for Twitter:
http://topsy.com/s?q=duchenne from which I discovered this news story about a newly trialled drug called Eteplirsen. To be honest I'd like to read the original published paper (and probably get some help in understanding its nuances) before I'd be as cheerful as the mum in this story.
Undoubtedly there are Facebook groups too.