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.
Whether Prof Steve Wilton said anything about cocktail of exon therapy. My kid's report says exon 46 to 50 deletion. That may require both exon 45 and 51 skipping drug to be given. Whether skipping 2 exons feasible/efficient?