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Chris Diemler
  • Male
  • Saint Louis, MO
  • United States
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Chris Diemler's Discussions

Eplerenone

Started this discussion. Last reply by David Jun 11, 2015. 9 Replies

Are there any families on here who's sons are in the eplerenone trial. I was curious if they would share any results they are seeing. I spoke by email with one father and the results to this point…Continue

Policy Forum Comments

Started Dec 16, 2013 0 Replies

I was working and unable to listen to the web cast of this meeting.  Does anyone know what the comments Janet Woodcock made concerning Sarepta's regulatory path?  There is alot in the financial…Continue

FDA & Sarepta

Started this discussion. Last reply by Chris Diemler Jun 5, 2015. 6 Replies

I am disgusted with the FDA's suggestion to Sarepta that they include a placebo group in their next trial.  I wish they could find a way to conduct these trials with out putting our sons through that.Continue

P.E. Class Alternatives

Started this discussion. Last reply by Andrea Cleary Nov 12, 2013. 1 Reply

Hello, my son is 6 years old and in the 1st grade.  They have a P.E. unit coming up which is the physical fitness test.  Does anyone have any ideas they have used to subsitute for a unit like…Continue

 

Chris Diemler's Page

Latest Activity

Chris Diemler is attending PPMD's event
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2017 Annual Connect Conference at Chicago, IL

June 29, 2017 to July 2, 2017
Save the date for PPMD's 2017 Connect Conference!Parent Project Muscular Dystrophy's Annual Connect Conference is a unique convergence of industry partners, scientific leaders, medical providers, people living with Duchenne, and their families. This exceptional meeting has grown to be recognized worldwide as the foremost Duchenne muscular dystrophy meeting. But more than that, it is a way…See More
Jan 2
Moein replied to Chris Diemler's discussion Flavocoxid
"I received this e.mail from the company which produces Limbrel (Flavocoxid): The study to which you refer was initiated after some positive results were obtained in a mouse model of muscular dystrophy. The human trial was done in a small number of…"
Nov 23, 2015
Rahul Deshpande replied to Chris Diemler's discussion Flavocoxid
"This drug looks promising. Waiting for the updates.  "
Nov 23, 2015
Moein replied to Chris Diemler's discussion Flavocoxid
"I would like to know  if you have any update on a clinical trial testing Flavocoxid in Duchenne Muscular Dystrophy in Italy.The trial was completed,but no updates."
Nov 21, 2015
David replied to Chris Diemler's discussion Eplerenone
"Yes, the OSU trial involves MRI.The echo results are not from the trial but from regular cardio appt. our last trip for MRI in the extension trial is in August"
Jun 11, 2015
amit gupta replied to Chris Diemler's discussion Eplerenone
"best wishes david for your family...you had mentioned cardiac mri as the primary outcome of the trial right? "
Jun 11, 2015
David replied to Chris Diemler's discussion Eplerenone
"We has another echo today. Third year in a row with stable ejection fraction (60%+) and shortening fraction (30%+). I'm sold"
Jun 10, 2015
Chris Diemler replied to Chris Diemler's discussion FDA & Sarepta
"Agreed David, this makes me ill. We as a community continue to allow the FDA to run rough shot over our kids and us while people and organizations with the clout to bring about change continue to tell us to play by the rules and that change is…"
Jun 5, 2015
David replied to Chris Diemler's discussion FDA & Sarepta
"Talk about disgusting.. here is an article that, for me, exposes the FDAs true motivation. How long have they insisted on more significant results from sarepta? And yet they'll approve a female viagra drug that the study sponsor themselves…"
Jun 5, 2015
Chris Diemler favorited Elie Feghali's discussion What is the cost of translana?
May 11, 2015
Shelly replied to Chris Diemler's discussion Eplerenone
"Good to hear...stay blessed.."
Feb 22, 2015
David replied to Chris Diemler's discussion Eplerenone
"Wanted to share this with the group. These are PFT results, 2009-2014. these are independent data points from my son's MDA clinic, with the date when he started open label dosing with Eplerenone. 3 of 4 series are headed down until dosing…"
Feb 22, 2015
Chris Diemler favorited Galia Ben Ishay's discussion Rycals
Dec 10, 2014
David replied to Chris Diemler's discussion Eplerenone
"My son had more lung function tests last week. The trend towards improved lung function did not continue on the path we had hoped for, but it still remains essentially unchanged from January 2013. I'll take that! Please note that the trial…"
Jul 10, 2014
Lacey rivera favorited Chris Diemler's profile
May 27, 2014
Lacey rivera favorited Chris Diemler's profile
May 27, 2014

Profile Information

About me:
I am 42 years old. I have been married to my wife for 9 years. We live in St. Louis, Mo.
About my family:
We have 2 kids, Henry andy Lucy. Lucy is 2 and Henry is 5. He was diagnosed with DMD on December 30, 2011
Name(s) of child(ren)/individual(s) with Duchenne:
Henry Diemler
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
St. Louis, Missouri

Comment Wall (14 comments)

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At 2:46am on December 18, 2013, Shandra Peters said…
Hello hru in your family I created this page a year ago jus not familiar yet
At 10:52am on November 18, 2013,
Staff
Pat Furlong
said…

really nice to meet you Chris.   Please feel free to email me directly Pat@parentprojectmd.org

At 9:59pm on November 14, 2013, Ricki Lewis said…

Sure -- but you probably  know more than I do! My email is rickilewis54@gmail.com

At 3:01pm on September 24, 2013, Amy Hemming said…
Hi Chris. I believe we may know each other. I work at the same company as Chuck. Maybe we can meet at a park in the next few weeks with our boys one Saturday?
At 11:28pm on September 4, 2013, Doan Nguyen Xuan said…

Hi Chris, thank you. I am very glad to talk to u. I hope that I could share and gain experience from u in terms of taking care DMD children.

At 2:59pm on July 8, 2013, Rebecca Nicole Parker said…

There hanging in there my older brother is hanging on and being very strong and my little brothers still mobile so that's something to be happy about my moms also being very strong with the whole situation thanks for asking hows your son doing?

At 2:16pm on January 16, 2013, Michelle Stoops said…

Chris, Quinten is doing well. We are approaching the 7 year anniversary of Quinten's diagnoses, so life is about to get crazy busy with our annual/semi annual appointments. He has really been struggling with being board lately. He does not like to go out in the cold, and it is a lot of work to get all bundled up to go outside (not to mention trying to move around in all of those clothes). I need to post, to get some ideas. How is Henry doing?

At 7:23pm on November 29, 2012, Dean Johnson said…
Chris: It is great to get connected. I have 5 kids: Meredith (14), HENRY (11-DMD); Thomas (8); Jack (5); and Madeleine (2). Our Henry was diagnosed at 18 months. He is now a 6th grader. He got a power wheelchair 6 months ago and also has a service dog. Life is very busy and dynamic here in Tallahassee. I look forward to sharing stories and support.
At 6:16pm on November 29, 2012, Steve Beaulieu said…

'Yes, Chris,  I hope so as well, although we all get busy with life and of course our families! Thanks, cheers'

At 8:39am on September 10, 2012, Ambre Grund said…

Thank you so much!

 
 
 

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