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Shady
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Shady's Discussions

Tamoxifen clinical trials

Started this discussion. Last reply by Alex Sep 29. 8 Replies

Good day,Does anyone knows if tamoxifen is recruiting now as I read before that the estimated enrollment date will be on September 2017,and does anyone tried tamoxifen a few or long time ago can…Continue

Abs workouts for duchenne

Started Jul 21 0 Replies

Anyone knows are abs exercises useful or not recommended for children with duchenne? and If useful ,how many repetitions and time weekly?

Duplication of Exon 53 to 57 out of frame

Started this discussion. Last reply by Sanja Kogelnik Jul 16. 1 Reply

Hello everybody, anyone has a patient son with duplication of Exon 53 to 57 ,also I would like to know would some out of frame mutations lead to Becker or mild progression for example (out of frame…Continue

Tamoxifen for children with duchenne

Started May 30 0 Replies

Dear parents my 7 year old son was recently diagnosed with dmd and we are waiting a genetic test ,he can walk till now and he started tamoxifen 2 weeks ago as I heard about tamoxifen promising…Continue

 

Shady's Page

Latest Activity

Alex replied to Shady's discussion Tamoxifen clinical trials
"Thx for answer, will wait for results of your trial. I wish all the best to your family"
Sep 29
Bruce Ward replied to Shady's discussion Tamoxifen clinical trials
"@Shady, thank you for the update.  I am so glad that Tamoxifen is helping your son.   I also hope and pray for more effective treatments.  For now we have to use what is available to keep our sons strong until better treatments are…"
Sep 28
Shady replied to Shady's discussion Tamoxifen clinical trials
"Dear Alex, Dear Bruce , I am from Egypt and it is sold under name of Nolvadex, I give him 10 mg once daily and it is cheap here, my decision to try tamoxifen is upon Mrs.Galia shared experience and it's promising results on mice,I have observed…"
Sep 28
Bruce Ward replied to Shady's discussion Tamoxifen clinical trials
"In the US Tamoxifen, also known as Nolvadex or Tamifen, is inexpensive and available via off-label prescription.  The complication would be finding a doctor willing to write the prescription.  It looks like you are in Russia.  I would…"
Sep 28
Alex replied to Shady's discussion Tamoxifen clinical trials
"Please tell us at least every month about the state of your child and general observations. I really hope for tamoxifen as a support before finding a treatment.. Where do you buy tamoxifen? Here is one more discussion of…"
Sep 28
Bruce Ward replied to Shady's discussion Tamoxifen clinical trials
"That is great news and consistent with the reporting from the small trial in Isreal. A trial is planned in Geneva, Switzerland where most of the Tamoxifen DMD research has taken place. A third is rumored to be forming in the US. Please continue…"
Sep 25
Shady replied to Shady's discussion Tamoxifen clinical trials
"the doctor didn't confirm using as it is still preclinical phase,so I have took the risk of trying 4 months ago , my son is 7 years old now and thanks God he is still ambulant ,minor improvement since taking tamoxifen and he is stable now,his…"
Sep 25
Bruce Ward replied to Shady's discussion Tamoxifen clinical trials
"I believe that trial will be carried out in Switzerland, I have not seen any mention of US sites. Have you asked your son's doctor about an off label prescription?"
Sep 25
Shady posted a discussion

Tamoxifen clinical trials

Good day,Does anyone knows if tamoxifen is recruiting now as I read before that the estimated enrollment date will be on September 2017,and does anyone tried tamoxifen a few or long time ago can share his experienceThanks in advanceSee More
Sep 24

Profile Information

About me:
Father of a 7 years old with dystrophy
Name(s) of child(ren)/individual(s) with Duchenne:
Ziad
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Cairo

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