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 Subject :Kevin Flanigan, University of Utah.. 2007-03-20 02:17:14 
kgoodfellow
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver
Hello Kevin Flanigan is one of the few doctors in the USA that sees patients on a regular basis and also has an extensive genetics laboratory. The attached article summarizes his current work. I have an appointment with him in Sept 2007. Kevin
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K. Goodfellow
 Subject :.. 2007-03-27 04:01:41 
bmdmom
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Joined: 2007-03-07 02:22:22
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Kevin, is this the doc that is doing the big database project? Does he specialize in just BMD or both BMD/DMD?
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Tanya mom to two BMD boys
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 Subject :He is the database guy.. 2007-03-27 04:38:01 
kgoodfellow
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver
Hey Yes, he is undertaking the large MD database project that is collecting MD genetic issues and trying to make sense of them to try and predict what problems are caused by specific genetic issues. I believe that he is trained as an adult neurologist, but has an interest in BMD and DMD folks. I have heard lots of great things about his work. Kevin
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K. Goodfellow
 Subject :.. 2007-03-27 05:22:31 
bmdmom
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Here's a link to this large project - http://www.genome.utah.edu/DMD/mutation_tables.cgi I think if you ask your local MD doc, they can add your mutation to his database.
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Tanya mom to two BMD boys
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 Subject :Got it.. 2007-03-27 07:55:12 
kgoodfellow
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver
Thanks I have a copy already. I'm going to have Dr. Kevin add it to his DB when I go to visit him in Sept. Kevin
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K. Goodfellow
 Subject :.. 2007-10-13 02:06:03 
kgoodfellow
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Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver
Hey I just had a visit with Dr. Flanigan and his research team. I highly suggest a trip out to Salt Lake City to visit with them. He is one of the top genetic researchers focusing on MD. He is one of the primary doctors working on the Mini-Gene for DMD gene therapy treatments. He is full of information about the current state of genetics and MD. His team also has a nationwide study going that tracks about 1000 MD patients on a yearly basis to try and better understand the relationship of the genetics and the symptoms. I am a very unusual case and he was able to tell me stories about 4 or 5 patients in the study that have similar genetic issues and symptoms as me. I found this very helpful to guess what my future holds. He is not a guy focused on therapies, but the genetics and learning how the genetic issues may be solved. If this interests you, I encourage you to contact his staff. I have the contact info if you want it. Just send me a message. Kevin
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K. Goodfellow
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