ferre
  • Female
  • angers
  • French Southern Territories
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  • Angela

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ataluren what are they doing?

Started this discussion. Last reply by ferre Aug 10, 2010. 11 Replies

ataluren what are they doing

Started Jul 21, 2010 0 Replies

ATALUREN PARENTS WE NEED TO FIGHT

Started this discussion. Last reply by ferre Mar 5, 2010. 2 Replies

 

ferre's Page

Profile Information

About me:
i am the mum of the kids; two of them have been adopted in thailand
the older has been diagnosted duchenne when he was 6 years old; he is now 10 years old
Name(s) of child(ren)/individual(s) with Duchenne:
1
Age(s) of child(ren)/individual(s) with Duchenne:
0-3, 4-6, 7-12
City:
angers

Comment Wall (3 comments)

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At 6:01pm on January 19, 2009, Angela said…
There are theories on the ups and downs of the response to the meds. Do you still have my email? Send me an email and I will be happy to share some ideas I have heard regarding this - it should help you feel better about it.
Ang :)
At 3:49pm on September 30, 2008, Kari said…
Welcome, Ferre, to PPMD Community.
At 1:39pm on September 30, 2008, Angela said…
Well hello old friend! It is nice to see you here. So glad to hear your son will be starting the PTC124 trial soon. Jack has been back on the medication since August 14th. So far, so good!
Our French friends arrive today from Saint Tropez, for a holiday in Colorado! We are very excited!
Ang :)
 
 
 

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