PPMD Community

Claire Diemler
  • Female
  • Saint Louis, MO
  • United States
Share on Facebook
Share Twitter

Claire Diemler's Friends

  • Joseph Steven Burr
  • Ainslee Riley
  • Cynthia Lynn Parker
  • Richard Darienzo
  • Chris Diemler
  • Matt Wallace
  • Andrea Cleary
  • Sharon Hesterlee
  • Gina Kopp
  • Jeff 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

Latest Activity

Claire Diemler shared PPMD's blog post on Facebook
Oct 5
Claire Diemler shared Pat Furlong's blog post on Twitter
Aug 4
Claire Diemler shared Pat Furlong's blog post on Facebook
Aug 4
Claire Diemler shared Jason Darienzo's discussion on Twitter
Feb 4
Claire Diemler replied to Jason Darienzo's discussion Sarepta's largest invester
"Thank you for posting, Jason."
Feb 4
Trinh Nguyen favorited Claire Diemler's discussion How did you talk to your son about DMD?
Jun 17, 2013
Tammy replied to Claire Diemler's discussion How did you talk to your son about DMD?
"My son will be 4 this summer and is starting to ask questions like "why did I fall Mommy?" If anyone else can add their experience with how to explain this, I would greatly appreciate it, especially from people who have Duchenne…"
Jun 12, 2013
Claire Diemler replied to Jason Darienzo's discussion Neotine medical-grade creatine
"Thanks, Jason.  We noticed an immediate improvement in Henry's energy level last fall after starting CoQ10.  It's impacted him almost as much as the steroids.  Kind of feels like a miracle drug.  I think we might start…"
Feb 22, 2013
Claire Diemler replied to Jason Darienzo's discussion Neotine medical-grade creatine
"Jason, do you/have you taken creatine?  We have Henry on CoQ10, daily deflaz, vitamin D, and Flintstones.  Wondering about creatine and fish oil.  What are your thoughts?"
Feb 21, 2013
Claire Diemler shared Tayjus Surampudi's discussion on Facebook
Jan 27, 2013
Gina Kopp replied to Claire Diemler's discussion Best schools? in the group Illinois/Missouri Families
"I'm so glad to hear that, we just moved to Crestwood from the city and Long is our school. Liam is almost 3 so we have a couple of years yet. He has an intake with Lindbergh pre-school program next week. Our son without Duchenne just…"
Jan 3, 2013
Karin Kattich replied to Claire Diemler's discussion Best schools? in the group Illinois/Missouri Families
"Lindbergh schools have been wonderful with my son Joey.  He has DMD and Autism.  Long Elementary was an extremely accepting and flexible school, and he is at Truman Middle right now."
Nov 13, 2012
Claire Diemler posted a blog post

How to make the FDA move forward?

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 of making this…See More
Sep 10, 2012
Claire Diemler replied to bob koch's discussion 2 brothers, 1 gets treatment & improves
"Agreed.  Do you know if the new legislation allows for this type of change?  "
Aug 23, 2012
Claire Diemler commented on PPMD's event Webinar: Back to School - IEP
"Will we be able to access the webinar after the fact? "
Aug 12, 2012
Claire Diemler might attend PPMD's event
Thumbnail

Webinar: Back to School - IEP at Online Webinar from 1-2 pm Eastern Time Zone

August 29, 2012 from 1pm to 2pm
Parent Project Muscular Dystrophy wants to help you continue dialogue with your child's school and start the school year prepared to tackle issues that may arise. The next webinar in our Direct Access series will be Thursday, August 30th at 1pm eastern. We will be discussing IEPs and assistive technology as our kids head back to school. Moderators Brian Denger and Jill Castle will go over what you need to know when…See More
Aug 12, 2012

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…

Continue

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)?

Comment Wall

You need to be a member of PPMD Community to add comments!

Join PPMD Community

  • No comments yet!
 
 
 

© 2014   Created by PPMD.

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service