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BMD Conference 2011 - RSVP Now!   by  on 2011-06-09 14:27:28
3rd Annual BMD Conference - August 13th, 2011 in Los Angeles   by  on 2011-02-02 12:28:53
BMD Registry - Very Important   by  on 2011-01-24 12:22:12
 Subject :Becker Conference.. 2009-07-19 23:30:45 
cmorz
Experienced
Joined: 2008-12-06 13:48:06
Posts: 30
Location: 
 
Hey Everyone, My husband Chris and I will be attending the Becker Conference on Aug 1st. I am looking forward to meeting those of you that attend! Send me a quick reply on here if you are going to the conference so I can keep an eye out for you....... Also, we were lucky to get Zach an appointment with Mass General's Neuromuscluar Team......Dr. Tseng! We are so happy to get a second opinion on his situation. (And, they are in network - BONUS!) :D We finally get to see the pediatric neurologist in our area this Thursday about the nodular heterotopia discovered in Zach's brain. I am very nervous about this appointment.....we have no idea the prognosis of this condition because boys afflicted with it usally die within the first year of life. I just hope we don't get another bomb dropped on us........ But, right now.....Zach is doing so well! He is doing a daily play camp and is getting lots of exercize. My only concern is that he is so thin. He was a very slim 55 lbs a year and a half ago......and now he is 53 pounds and he is taller. Could it be muscle loss that has made his weight go down? If anyone has any idea I would love to know. It's a question for the doctor for sure........ Anyway.....looking forward to meeting you!! Thanks, Leighann
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 Subject :.. 2009-07-20 00:46:04 
kgoodfellow
All Star
Joined: 2007-02-20 17:21:41
Posts: 679
Location: Denver
Hey Leighann I'll be at the conference too. Dr. Tseng is one of the best. You'll like him. He's my Dr. too. Thanks Kevin
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K. Goodfellow
 Subject :.. 2009-07-20 04:19:19 
Roxanne
All Star
Joined: 2007-04-13 22:09:01
Posts: 370
Location: Canada
Hi Leighann, I will not be attending the conference but will be thinking about you guys who are on August 1st. Wish I could be there to meet you guys. Please let us know what they say about utrophin and the up coming trial to be conducted by Biomarin. I also want to say Best of Luck with your appointment. Hope you get some answers with repects to the Nodular Heterotopia. Please keep up posted! regards, Roxanne.
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Roxanne Mom to Nicholas (10) with BMD
 Subject :.. 2009-07-23 04:38:33 
cmorz
Experienced
Joined: 2008-12-06 13:48:06
Posts: 30
Location: 
 
Hey Roxanne, Yes, I will keep you posted....I'm getting nervous. I have about two hours until we meet with the local neurologist to find out about the heterotopia. I'm so upset I have to take a sedation pill! I'm so pitifull!!!!! But thanks so much for the good wishes and I hope there is good news too about the utrophin trial......Talk to you soon, Leighann :?
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 Subject :.. 2009-07-24 03:28:24 
brandonsmom
New
Joined: 2009-01-11 01:21:29
Posts: 19
Location: Gardner, Mass
Leighann, you are not pitiful! It is very hard to see your child go through all this testing. All of us need help from time to time. Hang in there! I'm praying that your appt. goes well today. GOOD LUCK! As for the BMD conference, my husband Jon and will be there. See you there! Sherri
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Sherri

Brandon 8, Joshua 6
both w/ BMD
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