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Galia Ben Ishay
  • Female
  • Israel
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Galia Ben Ishay's Friends

  • Shady
  • taylan çakır
  • Sai Chand. Gurujala
  • Abby Bronson
  • Nadja
  • adi hazan
  • Nimi Langer
  • Moein
  • Ofir Arad
  • David
  • Antonis Nikolits
  • JUAN PEDRO ARBULU
  • Marks33

Galia Ben Ishay's Groups

Galia Ben Ishay's Discussions

Tamoxifen

Started this discussion. Last reply by Bruce Ward Sep 30. 45 Replies

Dear all,My 9 years old son has been taking Tamoxifen for 2 months now. He is taken care of by a wonderful team in Hadassah Hospital, Jerusalem.The drug considerably improved his condition: He can…Continue

Any news regarding the Tamoxifen trial???

Started this discussion. Last reply by Jay Griffin May 8, 2016. 1 Reply

Does someone (maybe PPMD) knows something about the advancement of the Tamoxifen trial? Research on mice date back to 2013, why clinical trials are SOOOOO long to start???(…Continue

 

Galia Ben Ishay's Page

Latest Activity

Bruce Ward replied to Galia Ben Ishay's discussion Tamoxifen
"Galia, it is wonderful to hear that your son has stabilized! It is especially wonderful that he is retaining ability and I assume some ambulation (walking) without taking steroids. Thank you so much for sharing his progress. I understand that your…"
Sep 30
Galia Ben Ishay replied to Galia Ben Ishay's discussion Tamoxifen
"Dear Alex and Sulthana, My son is stable, not better nor worse. I stopped giving him steroids (deflazacort) because there were only side effects, no benefits anymore.  All the best, Galia."
Sep 29
sulthana shaik replied to Galia Ben Ishay's discussion Tamoxifen
"Hi Is your son taking deflazacort/prednisone along with Tamoxifen? What other medicines were prescribed? Please let us know."
Sep 28
Bruce Ward replied to Galia Ben Ishay's discussion Tamoxifen
"Taylan, Could you share the range of CK values your son has had? I have not been able to find a range of CK values for Becker.  Thank you"
Sep 28
Alex replied to Galia Ben Ishay's discussion Tamoxifen
"Dear Galia, how is your son?Are you still taking tamoxifen?Your post inspired me very much"
Sep 28
JUAN PEDRO ARBULU replied to Galia Ben Ishay's discussion Tamoxifen
"jpaa72@yahoo.com"
Aug 29
JUAN PEDRO ARBULU replied to Galia Ben Ishay's discussion Tamoxifen
"Galia can I reach you by email?"
Aug 29
Galia Ben Ishay favorited Jason Darienzo's discussion Gene transfer corrects severe muscle defects in mice with Duchenne muscular dystrophy
Jul 28
Gloria Chen left a comment for Galia Ben Ishay
"Dear Galia Ben Ishay,  Thank you for your reply.  Can you please tell me how much weight your son is?  I would like to calculate how many mg of Tamoxifen my son need per day.  Thank you!  "
Jul 24
ven favorited Galia Ben Ishay's discussion Tamoxifen
Jul 23
Galia Ben Ishay replied to Galia Ben Ishay's discussion Tamoxifen
"Dear Gloria, I give him 20mg every evening. I don't know if you can get it without prescription. Good luck, Galia."
Jul 23
Gloria Chen replied to Galia Ben Ishay's discussion Tamoxifen
"Dear Galia Ben Ishay,   Can you please share to me the dosage of Tamoxifen to your son?  My son is now 49.4 kg, and he is 9.  I would like to know how many mg my son should take per day.  Thank you so much for your information.…"
Jul 23
Galia Ben Ishay replied to Galia Ben Ishay's discussion Tamoxifen
"Yes, I've understood it's for ALL mutations."
Jul 23
Sai Chand. Gurujala replied to Galia Ben Ishay's discussion Tamoxifen
"So it is applicable for duplication exons as well right?"
Jul 21
Nita McGauran replied to Galia Ben Ishay's discussion Tamoxifen
"My 6 year old has the same exon deletions 8-9. Here's hoping Tamoxifen get's approved soon!"
Jul 11
Shady replied to Galia Ben Ishay's discussion Tamoxifen
"Wishing your son and all of our sons a good health forever"
Jun 17

Profile Information

About me:
I'm the single mother of a 4 years old son with DMD.
Name(s) of child(ren)/individual(s) with Duchenne:
Adiel
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Nethanya

Comment Wall (4 comments)

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At 1:32am on July 24, 2017, Gloria Chen said…

Dear Galia Ben Ishay,  Thank you for your reply.  Can you please tell me how much weight your son is?  I would like to calculate how many mg of Tamoxifen my son need per day.  Thank you!  

At 6:20pm on June 9, 2017, Shady said…
Hi Galia ,any updates about tamoxifen with your child now?
At 2:42am on June 23, 2011, Nimi Langer said…

Thanks

I'll look into it.

If you want you can give me a call.

 

0523259284

Nimi

Gesher Haziv

At 4:25pm on June 22, 2011, Moein said…

Hi,

Could you please let me know if Deflazacort is available in Israel?

Thank you very much

 
 
 

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