"I found one of the widgets for predicting which exons need to be skipped to put the dystrophin back in to frame:
http://www.dmdregistry.org/reports/predictor/"
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Paul Cliff
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Started this discussion. Last reply by Keith Van Houten Dec 20, 2010. 4 Replies 0 Favorites
How can this be?
Started this discussion. Last reply by Paul Cliff Dec 9, 2010. 10 Replies 0 Favorites
Pushing our sons
Started this discussion. Last reply by Brian Denger Mar 1, 2010. 5 Replies 0 Favorites
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Paul Cliff replied to Isabel Cubas's discussion Vans"The MV-1 really seems like the best option as far as functionality, though given its weight and power train its likely to be a major fuel hog. I am also not a fan of American General when it comes to consumer vehicles. Until GM started…"
"any one heard of any grants in Texas for modifications?
"
Paul Cliff replied to Luis Merino's discussion Athena test came back negative, biopsy confirmed DMD"Susan's right. The genetic counselors at Duchenne Connect are fairly helpful, and are willing to take your calls multiple times which is helpful if, like me, you understand part of what they tell you, think about the rest and then have…"
Paul Cliff replied to Tulika's discussion 48week Prosensa study-any updates?"I'm with you that extra protein in the urine is troubling, but from my uninformed perspective it does not seem that surprising. The intended effect of the drug is to stimulate production of a new protein in the boys bodies. It…"
Paul Cliff replied to Leeandra Arhdeacon's discussion clinical trial"There used to be a couple of widgets at the websites for Leiden and the university of utah where you would input the mutation, and it would tell you which exons needed to be skipped to bring the dystrophin back "in frame," but after I…"
Paul Cliff replied to Leeandra Arhdeacon's discussion clinical trial"Now, all we need to do is figure out how to pay for the expanded access. Obviously, health insurance companies can legally exclude experimental treatments and generally prefer to do so, but I imagine that they also have a pretty good handle on…"
Paul Cliff replied to Leeandra Arhdeacon's discussion clinical trial"Leeandra, I believe the answer to your question is "no," and I don't know which exon needs to be skiped to put your son's dystrophin back into frame. I recommend you look at the Leiden University site for there exon…"
Profile Information
- About me:
- Hello all,
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:
- Alexander
- Age(s) of child(ren)/individual(s) with Duchenne:
- 7-12
- City and State:
- Riverside, Ca
- Country:
- usa
Comment Wall (16 comments)
- At 9:37am on January 13, 2010,
Ofelia Marin said… - 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…
- At 9:30am on January 13, 2010,
Tina said… - I got it to post. Thanks.
- At 9:29am on January 13, 2010, Tina said…
- Hi Paul
Can you send me your email address? The article is too long to post. My email is cmgcarson@comcast.net
Thanks, Tina
- At 10:15pm on January 12, 2010, Ofelia Marin said…
- Paul,
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.
Ofelia
P.S. Many parents already give it to their boys, Tina Graziano Carson started late last year. She is on FB as well.
- At 7:10pm on October 4, 2009,
Deb Robins said…
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.
- At 12:26am on April 11, 2009,
Julie Gilmore said… - Hi Paul,
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,
Jules
- At 6:33pm on February 16, 2009,
Gregory said… - Please join our San Francisco Bay Area Families group.
Greg
- At 12:17pm on January 9, 2009,
MicahsDaddy said… - "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.
Hope all is well,
Christian Delete Comment
- At 12:51pm on January 1, 2009,
djamel fathi said… - I see you're a lawyer ,can I have your e-mail,I need help for a case with the immigration.I do have a lawyer already,my case is complicated!!!
I'll give you more details,,,
Thank you.
- At 12:45pm on January 1, 2009, djamel fathi said…
- Hello,all of you We wich you a happy new year,long life and more succes in OUR fight against DMD.
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