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?
We aren't in a trial yet. We keep asking our clinicians whether there is anything we can join. They spoke about a losartan trial last time we had a 6 monthly check-up (back in January) and they said it should start in autumn (fall) but we haven't heard anything since which suggests that nothing is happening yet - hence my analogy!
We also need something more generic like utrophin up-regulation as Frederick has a duplication of exons 2 through 5.
If you time your visit for the end of October / beginning of November you could attend one of the Action Duchenne conferences and meet everyone.
Clever analogy! That's great that your son is doing so well! I know some days, for now anyway, I, too, can almost forget he has DMD, which is a good thing for my sanity and coping skills! Are you guys in any sort of trial? I heard they are getting ready to start utrophin phase 1 trials there. This is great news b/c this will be one of the only options for my son and also b/c this will be for ALL boys! It can not come fast enough!! (My son has an in-frame deletion of 45-46, so he should be BMD but doctors say b/c of his early presentation, he is DMD:( We are doing a muscle biopsy soon, which should help clarify some of our questions!)
Maybe some day when I head over the pond with my husband, we could all get together and meet. I can never have too many friends, esp. those whose living with the same diagnosis! Delete Comment
Are you right in London? My husband is there now--I so wanted to go with him. We lived there (in Woking) for about 2 yrs. My husband said the weather is so nice right now. He is wishing we were still there!
How long ago was your son diagnosed? We started down this road in Oct. last year and got the "official" diagnosis in Feb. We are still reeling from this--probably always will be:(
Have a great weekend!