Nimi Langer Male Kibbutz Gesher Haziv Israel: Favorite

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Idebenone

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7 Comments 0 Favorites
Patient Specific Exon Sk…

24 members
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Canadian Families

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Medication/Supplement Jo…

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Diet to lower CPK

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Sai Chand. Gurujala replied to Nimi Langer's discussion How much to give? in the group Idebenone

"Hi David, How is you son doing now. Hope he is doing well. Please share."

Feb 22

Sai Chand. Gurujala joined Nimi Langer's group

Idebenone

As one of the only supplements passing phase IIa with prove of safety and efficacy for our kids (450 mg daily)idebenone phase IIa.pdf, we should start looking at this one seriously.See More

Feb 22

7 Comments 0 Favorites

Vinu Joseph joined Nimi Langer's group

Patient Specific Exon Skipping -NOW!

Pushing forward a venture that will concentrate on that. See More

Apr 5, 2016

14 Comments 2 Favorites

Raj joined Nimi Langer's group

Patient Specific Exon Skipping -NOW!

Pushing forward a venture that will concentrate on that. See More

Dec 28, 2014

14 Comments 2 Favorites

Alexandre da Costa e Silva joined Nimi Langer's group

Idebenone

As one of the only supplements passing phase IIa with prove of safety and efficacy for our kids (450 mg daily)idebenone phase IIa.pdf, we should start looking at this one seriously.See More

Dec 22, 2014

7 Comments 0 Favorites

Ofir Arad replied to Nimi Langer's discussion How much to give? in the group Idebenone

"It's important to note that the safety was proved with boys between 10 and 18. High dose idebenone is toxic in vitro to brain cells http://www.ncbi.nlm.nih.gov/pubmed/21547417# so this dose may be dangerous to young kids. Remember that…"

Aug 29, 2014

Ofir Arad joined Nimi Langer's group

Idebenone

As one of the only supplements passing phase IIa with prove of safety and efficacy for our kids (450 mg daily)idebenone phase IIa.pdf, we should start looking at this one seriously.See More

Aug 29, 2014

7 Comments 0 Favorites

Rahul Deshpande joined Nimi Langer's group

Idebenone

As one of the only supplements passing phase IIa with prove of safety and efficacy for our kids (450 mg daily)idebenone phase IIa.pdf, we should start looking at this one seriously.See More

Aug 27, 2014

7 Comments 0 Favorites

Rahul Deshpande commented on Nimi Langer's group Patient Specific Exon Skipping -NOW!

"Hi Nimi, Any updates on this. My son is 9 years old and has deletion of 44 exon. The concept of patient specific exon skipping is very interesting. How is it progressing."

Aug 25, 2014

Rahul Deshpande joined Nimi Langer's group

Patient Specific Exon Skipping -NOW!

Pushing forward a venture that will concentrate on that. See More

Aug 25, 2014

14 Comments 2 Favorites

Debbie Schneider commented on Nimi Langer's group Diet to lower CPK

"Hi, we managed to reduce our sons levels by giving him COQ10 400mg per day with almond butter to help with its absorption. We also give 5000iu of Vitamin D drops in with this. An anti inflammatory diet is best with lots of fresh fruit…"

Aug 22, 2014

Nadja joined Nimi Langer's group

Idebenone

As one of the only supplements passing phase IIa with prove of safety and efficacy for our kids (450 mg daily)idebenone phase IIa.pdf, we should start looking at this one seriously.See More

Jun 27, 2014

7 Comments 0 Favorites

Yurii's mom joined Nimi Langer's group

Idebenone

As one of the only supplements passing phase IIa with prove of safety and efficacy for our kids (450 mg daily)idebenone phase IIa.pdf, we should start looking at this one seriously.See More

May 19, 2014

7 Comments 0 Favorites

Jason Darienzo commented on Nimi Langer's group Idebenone

"Should patients switch from Idebenone to Catena? Is Catena a prescription drug covered by insurance? "

May 17, 2014

Jason Darienzo joined Nimi Langer's group

Idebenone

As one of the only supplements passing phase IIa with prove of safety and efficacy for our kids (450 mg daily)idebenone phase IIa.pdf, we should start looking at this one seriously.See More

May 17, 2014

7 Comments 0 Favorites

David commented on Nimi Langer's group Idebenone

"My son had been on 900 to 1000 mgs of idebenone since he was 8. I feel it is very safe but your doc should weigh in. Still don't see why this trial matters since this stuff is already available online."

May 16, 2014

Profile Information

About me:: Business man @ Lawyer,

About my family:: Three Boys, youngest suffer from DMD

Name(s) of child(ren)/individual(s) with Duchenne:: Hadas

Age(s) of child(ren)/individual(s) with Duchenne:: 4-6

City:: Kibbutz Gesher Haziv

Comment Wall (5 comments)

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At 4:50am on June 23, 2011, Galia Ben Ishay said…: Nimi, how old is your son? Do you give him steroids? I'd like to warn you about the serious side effects of this drug, they are very important while the pseudo advantages are only temporary. This is for good reason that it is not accepted in France for instance. Do you know Pr. Nevo from Hadassa hospital? I went to him twice and don't intend to return. I didn't appreciate him at all.

Personnally I give my son green tea extracts, fish oil, reishi tinctura in white tea and massage with nigella oil.

I recently talked to Professor Tremblay from Quebec who is working on a revolutionary technique called meganucleases. He told me there is still much work to do and it may take a few years to be ready, if everything goes well.

Let's stay in touch,

Keren.

At 2:34am on June 23, 2011, Galia Ben Ishay said…: Nimi shalom,

I'm the mother of a 3.5 years old boy with Duchenne. I give him green tea extracts, have you heard about this natural medicine? I suggest you see the effects of epigallocatechine gallate on the clinical trials site, a current study will soon evaluate its efficacity on children. Have you also heard about byglican and Professor Tremblay's meganucleases technique?

All the best,

Keren (from Nethanya)

At 3:04am on February 7, 2011, Nabeel Ahmed said…: Dear Friend Brother,

Sorry for late reply,

Thanks for your valuable suggestion and medicine,I will try my best.

Thanks

Mehboob Ahmed

At 5:10am on January 18, 2011, Nabeel Ahmed said…: Dear Nimi Langer,

Thanks for your reply and Information about DMD & BMD research progress in Israel.

As your profile show you have 3 sons, and your son Hadas is only effected.

Before his birth you was know any thing about the decease.

do you use any kind of medicine for him to make him strong.

Thanks

Mehboob Ahmed

At 10:58am on January 15, 2011, Nabeel Ahmed said…: Hi,

This is Mehboob from Karachi Pakistan.I would like to share some information with you.

about DMD and BMD.

My son Nabeel Ahmed 17 years old with BMD is now on wheelchair.

Can I know what is progress now in your country about DMD and BMD.I have heard that Israel's researches and scientist are going very well.

please share with me about DMD progress in your country,

I think you will feel my heart feeling.

Thanks

Mehboob Ahmeed