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Bernardo A. Iriberri
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  • Buenos Aires
  • Argentina
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  • Michael Piacentino
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Bernardo A. Iriberri's Discussions

The FDA and Ataluren (Translarna)

Started this discussion. Last reply by Bernardo A. Iriberri Jul 28, 2016. 36 Replies

I am not seeing any posts or comments about the devastating news that the FDA has again chosen to sabotage Ataluren, by issuing a "Refusal to File" letter to PTC, which then led to the company…Continue

Ataluren Webinar

Started this discussion. Last reply by Peter Feb 17, 2014. 45 Replies

Last night I watched the recording of the Ataluren webinar, held on January 17, 2013. Excuse me for not sounding particularly upbeat about it. I know that PTC and everyone at PPMD are doing as best…Continue

Ataluren at low dose - Obviously a success!

Started this discussion. Last reply by Linda Owens Jun 5, 2010. 24 Replies

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Ataluren Trials - After the Conference Call

Started this discussion. Last reply by Bernardo A. Iriberri Mar 11, 2010. 7 Replies

I have read the notes on Friday's call with PTC, which were posted yesterday on PPMD's main website, especially Sharon Hesterlee's useful comments. I've also read Pat Furlong's blog and her words…Continue

Tags: Ataluren

 

Bernardo A. Iriberri's Page

Latest Activity

Bernardo A. Iriberri replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?
"Thank you very much for your answer Dakota. Very inspiring to read your comments."
Aug 4, 2016
Bernardo A. Iriberri replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?
"That's great Dakota!. My son Hernan stopped walking at 16. Did you have heel cord surgery at one point? We chose not to do it but I would like to know if you did and if it worked for you. Sam, deflazacort works for all boys with DMD. My son…"
Jul 28, 2016
Bernardo A. Iriberri replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"I wish we could do something, but I am affraid that especially for those of us who do not live in the US there's nothing realistically available. Personally I am just hoping that the application in Canada is successful, and then I will apply…"
Jul 28, 2016

Staff
Ryan Fischer replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"All, Two things: If you have been involved in a clinical trial with ataluren or are on translarna currently. please take the following survey: http://www.parentprojectmd.org/translarnaexperience Also, for those interested, we are holding a…"
Jul 28, 2016
Sam replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"pls let me know if we can do something to accelerate FDA's action and respond, it is nonsense that FDA slow down or ignore decisions that make life saving difference! i am from Iraq and nothing available here neither community for DMD nor…"
Jul 28, 2016
Frances Maher replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
Jun 20, 2016
Frances Maher replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
Jun 20, 2016
Bernardo A. Iriberri replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"Thank you very much for your post Frances. I sincerely hope that your grandson can access Translarna soon. My son will turn 26 in August and here we are, still evaluating the prospects of applying for an import permit from Europe (we live in…"
Jun 20, 2016
Frances Maher replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
Jun 20, 2016
Frances Maher replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"Dear Mr. Iriberri, I have been trying unsuccessfully to learn how well European boys have done with the Ataluren. I have contacted PTC Therapeutics but am told to have the doctor phone. I only know that the FDA would not review the drug because it…"
Jun 20, 2016
Nida Zuberi replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"Any update on Ataluren. It's been approved in the UK now! Can we please do something about it, how do we raise our voices and be heard on this drug. It's torture to know that there is a drug out there than can help but access to it is…"
May 24, 2016
Cinni replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"Thanks Ryan :)"
Apr 12, 2016
Cinni replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"Never mind I read it :)"
Apr 12, 2016

Staff
Ryan Fischer replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"Hi Cinni!  PPMD has been in communication with PTC since they received the Refusal to File letter from the FDA. It is our understanding that PTC is putting together a strategy so that they can go back to the agency in order to understand a…"
Apr 12, 2016
Cinni replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"What did Ryan post?"
Apr 12, 2016
Jay Griffin replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"Thx"
Apr 12, 2016

Profile Information

About me:
I am a 55 year old attorney from Argentina, father of a boy with DMD
About my family:
My former wife and I have three children, two daughters aged 24 and 21 and a son who is 19 years old
Name(s) of child(ren)/individual(s) with Duchenne:
Hernán Iriberri
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
Buenos Aires

Comment Wall (2 comments)

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At 2:04pm on February 20, 2013, Michael Piacentino said…

Well for us the Ataluren low dose started after the high dosage trial and after the initial "limited" 30 day trial back in April 2006,. So, it has been a while. Essentially our son is 19  uses a power wheelchair to get to classes on campus and carry his books, He is a second semester college sophomore.  Please do not get the idea he's "all normal" yes  he can walk and do so for about 5 min now before he has to stop and rest, his upper body strength is limited, however things like cardiac and pulmonary are "normal" for a boy his size and age, so that's great. We got an extra few good years of mobility for him but more importantly his internals are good and holding steady.

At 9:31am on March 10, 2010, Holly Now said…
Did or is your son taking steroids?
 
 
 

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