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Nadja
  • Female
  • Fürth bayern
  • Germany
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  • Shaynee Ferguson
  • Abby Bronson
  • Kathleen
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Nadja's Discussions

Idebenone

Started this discussion. Last reply by Kathleen Feb 1, 2016. 4 Replies

Hi everybody!I want to give my in may four years old boy idebenone!I order it from HBC. 180 Tabletts 50 mgAt the moment the idebenone catena trial Sounds very good,is the product from HBC really the…Continue

Summit

Started this discussion. Last reply by Moein Mar 15, 2014. 17 Replies

Has anybody news about the summit trial???

No news about summit

Started this discussion. Last reply by Maggie Jan 31, 2014. 4 Replies

Has anybody news about the summit trial???

 

Nadja's Page

Profile Information

About me:
I am 30 years old
About my family:
My Hausband helmut is 31 years Old,and our son max in may three years
Name(s) of child(ren)/individual(s) with Duchenne:
Max
City:
Fürth
State:
Germany

Comment Wall (6 comments)

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At 8:10am on December 23, 2016,
Staff
Abby Bronson
said…

Hi Nadya! I received your post about your company wanting to make a donation. Absolutely every donation that is made will get a receipt. If you make the donation online, then the receipt is generated automatically. If you send in a check, just include instructions as to where you want the receipt mailed. Thank you so much and let me know if you have any her questions. 

Happy Holidays!

Abby

At 11:42am on December 16, 2016, Shaynee Ferguson said…
Hi Nadya!

Thank you for commenting...I am really happy that you requested me and have a very similar case with your son as I do...if you don't mind me asking...how is your son doing? What is he classified as now that he is a little bit older? Thank you.
At 11:24pm on April 3, 2014, Andrea Ortiz Sierra said…
It has been so hard. How is Max doing??
At 11:22pm on April 3, 2014, Andrea Ortiz Sierra said…
Hello Nadja, I was very happy to recieve your message. Santiago is doing ok, thank you.
Seven years ago, Santiago's legs got swollen, first doctors thought it was a immunologic disease, then they said it was something viral. But I always thought something was wrong.
Santiago has always had learning disabilities, so we had gone to many doctors. The last neurologist told us that maybe he had a muscular problem. That was like five years ago. Two years ago Santiago had a biopsy, but iit got contaminated. I was furious. Well, finally this January, he had a genetic test. He had 7 exons duplicated, the genetist said it was duchenne.
At 11:50pm on March 4, 2014, juan banuelos said…

hi nadja its me juan don't know if you remember me, in the past I'm the one who told you that Germany has a clinical site as well. we took our son to see if he qualifies for the Cialis trial it will be a few weeks to know if he qualifies, have you looked into this trial for your son? have you heard anything good about it ? have you commented this to your doctor?

At 11:42am on March 4, 2014, Phil said…

Hi Nadja, sorry I never replied sooner, I just seen your comments. Hope Max is doing fine. We are going to try and get our Max into the Tadalafil phase 3 trial which is just starting up.  

 
 
 

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