I am extremely excited about this
http://growingstronger.org/wp/category/blog
I know it could be 5-10-15 years, but at least they are working on developing a drug to help bone growth...
Here are 2 really cool videos, the first one is an overview of ACH, the second one is about the drug tested:
http://www.youtube.com/watch?v=3ZVGnbGpPmU&feature=player_embedded
http://www.youtube.com/watch?v=5EeKi1xYXas&feature=related
Petite yet fierce - Ramblings of a pathologically information hungry mother about hypochondroplasia, about rearing 3 girls in a foreign country and about all the random thoughts my sleep deprived and over-stimulated brain can come up with.
Hi! Found your blog from The Johnson Family blog. I am EXTREMELY excited about this too! Of course, I'm sure we all are. :) Would you consider letting your daughter be a part of the clinical trials when the pediatric phase two starts?
ReplyDeleteHiya Jennifer,
ReplyDeleteYou would be surprised how many people don't seem to care about the clinical trial. Based on what I understand about clinical trials I think I would wait for phase 3, especially because Fi has hypo, I am trying to find out if they will do any testing for HCH at all, based on what I understand about the mechanism of the proposed drug, it seems like HCH would be an equally good target, so fingers crossed...
This subject is so taboo in the LP community and I don't understand why. I am interested in this!!
ReplyDeleteNo one should judge our decisions! I know for our family we will make these decisions together and that's our right! :) I was telling Katie...from the Johnson Family 5 about the pictures of the mice used in the study. Do you know where those photos are now? I can't seem to find them.
ReplyDeleteHi,
ReplyDeleteThey are in the second video of the presentation when the guy from Biomarin is talking: http://www.youtube.com/watch?v=5EeKi1xYXas&feature=related