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Nadja
  • Female
  • Fürth bayern
  • Germany
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Nadja's Friends

  • Shaynee Ferguson
  • Abby Bronson
  • Kathleen
  • Jay Griffin
  • Sanja Kogelnik
  • Dakota Ferrazzi
  • Andrea Ortiz Sierra
  • Katie Mader
  • Maggie
  • juan banuelos
  • Ashok Sangwan
  • Marcus Sistig
  • paul roberts
  • Klaartje Spijkers
  • Simone & Elias

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

Latest Activity

Nadja replied to Sanja Kogelnik's discussion Nicotinamide riboside
"Yes Dr. Auwrex says 250 per day but you need a high dosage and to give more is not dangerous I buy the one from throne 60 x 250 mg i think 50 Euro Where do you read this about the weeks? I think After 4 weeks max has become even stronger and better…"
Feb 1
Nadja replied to Sanja Kogelnik's discussion Nicotinamide riboside
"Yes i bought the same but i give him 500mg per day because it is not dangerous when you give more"
Feb 1
Nadja replied to Sanja Kogelnik's discussion Nicotinamide riboside
"I have written with him He is very friendly!"
Feb 1
Nadja replied to Sanja Kogelnik's discussion Nicotinamide riboside
Feb 1
Nadja replied to Sanja Kogelnik's discussion Nicotinamide riboside
"Hi sanja No not yet at the moment But he is very strong i am so happy about this He will be 7 in may How is your son doing? Best wishes Nadja"
Jan 18
Nadja replied to Sanja Kogelnik's discussion Nicotinamide riboside
"I give it my son I spoke with the researcher I buy it on Amazon and he get 2 capsules 500mg daily i think since 3 Werks"
Jan 18

Staff
Abby Bronson left a comment for Nadja
"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…"
Dec 23, 2016
Shaynee Ferguson left a comment for Nadja
"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?…"
Dec 16, 2016
Nadja replied to Terry Ann Attaway's discussion Beckers Type MD
"Andrew thats right It could be Switch duchenne to Becker"
Oct 12, 2016
Nadja replied to Nita McGauran's discussion Prednisone and weight gain
"That is good!!what do you think about it?how long is he on the Trail?"
Aug 23, 2016
Nadja replied to Eddy Rivera's discussion As I give my son Deflazacort?
"Hi 21,6 mg"
Aug 23, 2016
Kathleen replied to Nadja's discussion Idebenone
"Dear Nadja, I would like to give my 4 yr old Idebenone ( Raxona/Catena) But doctors in Holland are not familiar with Idebenone yet. Could u tell me about your results, the doses that has been sucsribed and if u do not mind I would also love to…"
Feb 1, 2016
Nadja favorited Andrew Kerr's blog post Myostatin Inhibitor Trials
Jan 19, 2016
Nadja replied to Joshua's mom's discussion CRISPR
"I get an answer from Dr Cohn he think 2-3 years"
Dec 24, 2015
Nadja favorited mehrzad haidari's discussion Halo HT-100 Clinical Trials is enrolling
Dec 1, 2015
Nadja replied to David's discussion epicatechin and Duchenne
"I am intrested too.i saw i can Order it in the internet"
Nov 17, 2015

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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