79 CharactersPlease watch and share this fantastic Youtube powerpoint video put together in the UK which explains Duchenne using 79 characters per slide, one for each exon.It's simple, original and stresses the need for treatments to be made available as soon as possible - it's a great way to continue to raise awareness ahead of the UK Translarna lobby next week.Please share with your network on Facebook and Twitter - thank you!…See More
I saw on Ryan Lochte that you are involved with Action Duchenne. Can you tell me what this is about? My husband has organised the Tour Duchenne (see under events tab), and last year raised $200000 for MD Australia. Since we are moving to the UK, and very much want to stay involved with fundraising, it would be great to know what others are doing and see how we can get involved.
We are moving to London in the next 2 months. Who is your son's doctor? Where abouts in London are you? I am trying to get as much info as I can before we arrive. We will be living in Beckenham, Kent. Maybe we can organise a UK Families group?