"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…"
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Claire Diemler
- Female
- Saint Louis, MO
- United States
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Claire Diemler's Groups
Claire Diemler's Discussions
Prednisone v. Deflazacort
Started this discussion. Last reply by Tamara Walters May 30, 2012. 6 Replies 0 Favorites
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 Claire Diemler Apr 3, 2012. 3 Replies 0 Favorites
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 0 Favorites
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 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?"
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…"
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."
Claire Diemler posted a blog postHow 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
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?
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Claire Diemler commented on PPMD's event Webinar: Back to School - IEP"Will we be able to access the webinar after the fact?
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Claire Diemler might attend PPMD's event
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
Claire Diemler replied to Rupjani B's discussion Summit's SMT C 1100"Thank you for posting this update. Good questions, too."
Claire Diemler replied to Veronica E.'s discussion Another heartbreak"I think of you and Max all the time, Veronica. We are sending prayers your way."
Claire Diemler commented on Kathi Kinnett's blog post Transforming Duchenne Care Summary"Great summary of the needs of our community."
Claire Diemler replied to Jason Darienzo's discussion Protein Found in Spider Venom Could Treat Muscular Dystrophy"Jason, have you heard of this before now? Their website looks really thought-out."
Claire Diemler replied to wainaina muiruri's discussion Stroke"Our family is thinking of you and your son. "
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 0 Favorites
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…
A question for parents of children in the 51 skipping trials
Posted on June 25, 2012 at 10:23pm 0 Comments 0 Favorites
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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