Started May 27, 2018 0 Replies 0 Favorites
My son will miss the only trial that I can find that just may give him more time because his fvc score is below their magic number. While the tragic irony of this fills me with rage, I'm again left…Continue
Started this discussion. Last reply by Rahul Deshpande Jan 21, 2016. 1 Reply 0 Favorites
Capitalism in action, enough to make you want to throw up! Masters is now selling Idebenone (renamed to Raxone) as a prescribed pharmaceutical. I presume that they received some sort of special…Continue
Started Apr 25, 2015 0 Replies 0 Favorites
Yes it is important to raise awareness of research and charitable events.But, don't fall to mention the money to be made! The latest reports are rather impressive, and we all know what motivates many…Continue
Started this discussion. Last reply by Maria Salamon Jan 27, 2015. 6 Replies 0 Favorites
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Hi David,
You probably never expected the world to be this small!! I'm so glad you talked to him. He's one of the best advocate doctors you will know. You are more than welcome. We are all DMD family.
Hi David, I saw your post on Idebenone regarding your son's doctor suggesting it. I also see you are close to Sacramento. The doctor we had here who suggested Idebenone has moved back to Sacramento. His name is Dr. Andrew Skalski. I just had to ask if you are familiar with him or his team?
Naomi
Hi David,
Oh, really, I didn't remember. I'm sorry for my mistake.
And I'm very happy to be your friend. .
But there're one thing, I want to ask you why your son need exon 17,18 skipping? I think it should be exon skipping 17 only.
Thanks
Van Anh
Hi David,
My son needs exon 17 skipping (he has delection of exon 18-25), and in your comments left on delection group , you mentioned about Katerina with exon 17 skipping. Please send me her contact. I really want to find someone with my boat.
Thanks
Van Anh
Please contact me at cherylcliff@gmail.com. I have some information you might find helpful regarding your seeking an IND.
Thanks once again.
MAY GOD BLESS YOUR FAMILY.
Raktim
Do you any information on ACE-031. Personally I am quite excited about that. This surely can give our kids some more strength, muscles and time(especially in the light of latest delay in exon trials in US).
I am aware of ACE-031's canada's PH2 trials. Are there any planned in US also. Any other info related to this will surely help.
Thanks
MAY GOD BLESS YOUR FAMILY.
Raktim
Thanks once again.
Raktim
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