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Galia Ben Ishay
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  • Israel
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  • Sai Chand. Gurujala
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Galia Ben Ishay's Discussions

Tamoxifen

Started this discussion. Last reply by ANTONIS NIKOLITS on Friday. 18 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

Celal Tüntaş favorited Galia Ben Ishay's discussion Tamoxifen
Saturday
ANTONIS NIKOLITS replied to Galia Ben Ishay's discussion Tamoxifen
"Hello, My son is suffering from Limb Girdle MD.This topic about Tamoxifen is really interesting because no treatments are underway for his condition. Research was conducted on mdx mice so I don't understand is if this drug targets DMD muscles…"
Friday
ven replied to Galia Ben Ishay's discussion Tamoxifen
"Thanks Galia Ben!! this is very helpful information. "
Feb 26
Sanja Kogelnik replied to Galia Ben Ishay's discussion Tamoxifen
"Dear Galia, thank you very much for sharing this news with us. You give me new strength. Good luck ;)"
Feb 20
Galia Ben Ishay replied to Galia Ben Ishay's discussion Tamoxifen
"Hi Sanja, sorry for the late answer. Actually yes, my son is still on deflazacort (every other day). I also give him idebenone (300mg daily). But in my son no existing drug has been better than tamoxifen so far."
Feb 18
Sampreet replied to Galia Ben Ishay's discussion Tamoxifen
"No but smtc1100 is enough to prolong the time we need to find the best therapy to cure it.I think gene therapy is the most effective way to cure this disease, but the big size of the dystrophin makes it nearly impossible to deliver the required…"
Feb 18
Sai Chand. Gurujala replied to Galia Ben Ishay's discussion Tamoxifen
"How is your son doing Sampreet. Hope he is not on wheelchair. So there won't be a complete cure for DMD?"
Feb 16
Sampreet replied to Galia Ben Ishay's discussion Tamoxifen
"Hi,I am the parent of a 16 year old with duchenne muscular dystrophy . I suggest you contact DART dystrophy annihilation research trust in bangalore if you are in India . If you need to know ,price of eteplirsen in Indian rupees is nearly 2 crore…"
Feb 15
Sai Chand. Gurujala replied to Galia Ben Ishay's discussion Tamoxifen
"Hi All, EXONDYS 51 (eteplirsen) is approved by FDA in Sept'2016. I heard this medicine is not much effective for the treatment. Is this true? And does anybody know the price of it? Now, Ezutromid and Tamoxifen are on clinical trials. As DMD is…"
Feb 15
Sanja Kogelnik replied to Galia Ben Ishay's discussion Tamoxifen
"This is encouraging news. So this is yet another option for the treatment of DMD. Now that your son is taking Tamoxifen does he take corticosteroids or specific vitamins such as enzyme Q 10, extract of green tea, fish oil ...?"
Feb 12
Galia Ben Ishay replied to Galia Ben Ishay's discussion Tamoxifen
"Hi Rahul, Actually he takes it through compassionate use in Hadassah hospital. He takes 20mg every evening. I can't see any side effect so far and none of the 3 children who've been taking if for about one year have…"
Feb 11
Rahul Deshpande replied to Galia Ben Ishay's discussion Tamoxifen
"Hi Galia, Thanks for sharing. Very exited to know that Tamoxifen is working. Are you giving it as part of the trial or on your own. What is the dose that you are giving. Did you observe any side effects. Did you see any reduction in fibrosis or any…"
Feb 10
Sai Chand. Gurujala replied to Galia Ben Ishay's discussion Tamoxifen
"Let's all hope for the successful completions of all phases and with god grace all children are cured. May be it completes in 2019"
Feb 10
Michael Bazant replied to Galia Ben Ishay's discussion Tamoxifen
"Thank for the great news, it seems to be part of Phase 1 of the this research: https://www.clinicaltrials.gov"
Feb 10
Galia Ben Ishay replied to Galia Ben Ishay's discussion Tamoxifen
"My son has deletion of exons 8 and 9. Anyway Tamoxifen is not mutation specific."
Feb 10
Sanja Kogelnik replied to Galia Ben Ishay's discussion Tamoxifen
"Dear Galia, thanks for sharing this great news ;)"
Feb 10

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

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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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