Hi Kimmy, glad to hear the interview went well. If you are able to get to the on-line article, just copy and paste the link (browser box) that is at the top of the page and send it to me here or in an email. Would love to read it. Good on you for winning the bet with your Mom! You are both good sports.
Team Super Simon raised $5800. so he won the prize...again. But then when we got home we had the sad news that one of the DMD boys had died, age 22. He was going to be a film maker, had already done a few shorts on his own.
Kimmy- eteplirsen is still in trial, right now in ambulatory boys. There has been no research of this drug in the non-ambulatory patients, so we don't yet know if this drug may have benefits for people living with Duchenne who are no longer walking. Hopefully future trials with eteplirsen will give us that information.
Thanks Kimmy Watters. We are doing really well considering. We have had to make some very quick changes to our lives and are now seeing his illness for what it is rather then living in a state of wonderment and worry. Luckily I connected to this community and our local FACES which has made this transition so much easier. We are very fortunate to live in this age of technology, I could not image of others managed prior.