Why are there so many days when I wish that I knew more and the other days I wish we had never known? 5-16-09
Feeling like we won the lotto, Sawyer is eligible for exon skipping 3-09-11
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Sounds great! My email is melissameller7@gmail.com or fb :)
Hi Brenna, Lucky indeed!!! I am so hopeful for this trial. Danny needs 45 which is on there short list! How is Sawyer doing? We are about 5 hours from each other :( Maybe we can meet up at some point when we are camping or something, then we will go a little further into Northern WI. I would love to meet and hang out! My son is 6 (7 in August) and we don't know or I should say have any friends close enough! Hope all is well and am very anxious to hear about your experience with the trial :)
Hi Brenna,
I hope you got my message. You can email me at superflip656@hotmail.co.uk.
Take care,
Lisa
Hi Brenna,
Unfortunately, we have not participated in any clinical trials to date. Cullen is scheduled to visit Dr. Day at the U of M next week for screening for possible future trials with non-ambulatory boys. I'd like to hear more about the exon skipping trial Sawyer is taking part of. What is his deletion range? We have a daughter in school in Mpls. so we travel through your area often...It would be nice to meet you and your family sometime..
-Jeff
I heard you got to meet Xavier and my Sister in Law at camp yesterday. Suzie said that Sawyer is quite a cutie! Xavier had an absolutely awesome time at camp. He is quite unhappy he had to come home. I hope things are going well with you. Our next 6 weeks are crazy but after that I would still love to try to get together sometime!
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