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Claire Diemler
  • Female
  • Saint Louis, MO
  • United States
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Claire Diemler's Friends

  • Joseph Steven Burr
  • Ainslee Riley
  • Cynthia Lynn Parker
  • Richard Darienzo
  • Chris Diemler
  • Matt Wallace
  • Andrea Cleary
  • Sharon Hesterlee
  • Gina Kopp
  • JB Kopp
  • Jason Darienzo
  • Dave Welborn
  • Tamara Walters
  • Lisa Jones

Claire Diemler's Discussions

Prednisone v. Deflazacort

Started this discussion. Last reply by Tamara Walters May 30, 2012. 6 Replies

We have been presented with two different options by two equally passionate doctors.  One doctor has prescribed weekend-dosing prednisone.  She is basing the effectiveness of weekend dosing on…Continue

How did you talk to your son about DMD?

Started this discussion. Last reply by Tammy Jun 12, 2013. 4 Replies

My son Henry, 5 years old, was diagnosed in December. He thought the bloodwork that we had done would help the doctors fix him so he could play soccer and swim...his words. ( I didn't know why we…Continue

DMD resources

Started this discussion. Last reply by Claire Diemler Mar 31, 2012. 2 Replies

Somewhere on PPMD I found a website that provided results of patient surveys as well as information regarding clinical trials.  Does this sound familiar to anyone?  I can't for the life of me find it…Continue

 

Claire Diemler's Page

Profile Information

Name(s) of child(ren)/individual(s) with Duchenne:
Henry
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
St Louis, MO

Claire Diemler's Blog

How to make the FDA move forward?

Posted on September 10, 2012 at 12:17am 0 Comments

Regarding the recent articles about Jenny McNary's two sons:  Sarepta's Chris Garabedian says:

Parents and patients will be crucial to making that case to the FDA, he says: 'Here are parents who are willing to sign waivers that say, 'I don't care that this drug hasn't been tested fully ... because I know the alternative."



How can we in the PPMD community most effectively make this case?  Because of the publicity McNary has received, the public seems to understand the importance…

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A question for parents of children in the 51 skipping trials

Posted on June 25, 2012 at 10:23pm 0 Comments

Hello PPMD Community, my husband and I are sitting here discussing exon skipping... are there parents out there whose sons are involved in current 51 trials, specifically GSK/Prosensa trials? AVI has been pretty forthcoming with their results but we have a hard time finding info on GSK's.   We are wondering what your experiences have been and if you see benefits in your sons (for those in either trials)?

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