I'm now almost 46, and I live in Riverside where my partners and I own a business which supplies legal services to closely held business and wealthy individuals. Yes, that means I'm a lawyer, but don't hold it against me and send me any good, new lawyer jokes you hear.
About my family:
Cheryl is my wife and we have our oldest, Alexander and his little brother Max. The boys are 13 months apart (don't try this at home), and between the occasional episodes of fussing and fighting, are as close as twins.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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Yes, same here, I hate to put Robert on these things...but we do not have a lot of choice here... Talk to Flanigan, if they start that trial soon then Alex can participate...you need to be careful though, what if other trials (utrophin, myostatin start soon enough) you would want Alex in one of those trials instead. As always, a very difficult decision to make…
You might want to ask Flanigan about a possible Losartan vs Lisinopril trial planed at Columbus Childrens. I know that is mostly to see effect on the heart but better than nothing... Last September I was told that they plan to start this year, but I did not ask more details.
I know that the Johns Hopkins guys are also planning a Losartan trial. Ask Pat Furlong. She has details.
P.S. Many parents already give it to their boys, Tina Graziano Carson started late last year. She is on FB as well.
I'm sorry Paul for being a bad organizer. I must practice more or delegate, because I was the only person with 'record' access but got kicked out of the room for a few seconds about 4 times (you go back in or you log back in very quickly - must have something to do with my phone line) anyway it stopped the recording and my ability to save the transcript each time. Here is a shot of some of the questions asked but not the answers. Annemieka is going to do another chat for us later in the year about 'other approaches' and I will advertise that & would like some feedback about a better time for your region too. It was a very good test since most people were happy with the quality of the room overall but we could have used it more efficiently and I will try to write a longer tutorial about it. I have been busy lately with our next conference stuff in February and I suppose I can always use the 'we are volunteers in DF (formerly PPA)' excuse but that's the truth of it. If you have a question for Annemieka she gave her email and it is there on her webpage for laypersons in Leiden so I'm sure she will answer. Find it here: http://www.humgen.nl/lab-aartsma-rus/ My apologies again for lack of ability to archive it this time.
Haven't had time to "browse" on the website for ages, and today I decided to ignore the dishes and take some personal time.....
Going back through my posts (as it appears I really managed to rattle someones cage) I noticed that I replied to one of your posts and called you Cliff....... I can't believe I committed such a faux pas and very embarrassed....... to make ammends I thought I would send you a new lawyer joke:
A barber gave a haircut to a priest one day. The priest tried to pay for the haircut, but the barber refused, saying, "you do God’s work." The next morning the barber found a dozen bibles at the door to his shop.
A policeman came to the barber for a haircut, and again the barber refused payment, saying, "you protect the public." The next morning the barber found a dozen doughnuts at the door to his shop.
A lawyer came to the barber for a haircut, and again the barber refused payment, saying, "you serve the justice system." The next morning the barber found a dozen lawyers waiting for a free haircut.
LOL Hugs to you, Cheryl and your two beautiful boys,
"Alexander would need to skip his damaged exon 44 and exon 45"
yes, that is correct. with deletion of 44, then that one and 45 would be skipped. so, the frame would read "...41,42,43,46,47,48...".
from what i recall, 45 is one of the top 6 that will be tested...i just don't know the order that the top 6 will be tested.
(sorry for the typo in the previous message: "...that skipping either 43 or 44 would work." Should have said "...that skipping either 43 or 45 would work.")
Anyway, I am out of touch with all the research and stuff now. My job moved from Poway (30 miles from my house) to Santa Ana (60 miles from my house). Because of this move, my team of 4 is now down to just me. Basically, I am doing the job of 4 people now and haven't had time to follow research, message boards, etc. And honestly, it has been a great relief.