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
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
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
Here is the link to Dr. Skalsky. Everyone here, in Manitoba, virtually cried to see him go. He was the first on who actually knew the deletions & duplications the kids had before we met him. He knew more about DMD than the geneticist did! He was also the one who pushed for Idebenone here in Canada. That was the main reason why he came here. Most all DMD kids are now on Idebenone because of him!!
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?
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.
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 David for the information. So as I understand, cocktail of medicine which can skip more than 4 exons can be less efficient (but hopefully 2 exon skipping cocktail can still work.)
Thanks once again.