I was on the conference call tonight with many other HD families. My daughter participated in the study last year. I was so encouraged by the three brave women who spoke of there certainty of being on PBT2 due to having experienced healing mentally and physically -- for the first time in years. I hope that there is some way to move access to this drug to those who are slowly dying.
I hope so too, especially now that it has been shown to be safe. Please share your experiences and concerns within the HD community, which may ultimately prove influential with the FDA.... perhaps an open label extension trial such as Prana has underway in Australia for AD could be authorized here as well for HD patients. in any event follow on trials in HD should occur soon and be relatively brief.
You may not see this because you may not stop by here very often, but you've got me curious. I know this has been asked of you elsewhere, but I've lost sight of that post.
You wrote above of "three brave women" whom you heard speak about their personal experience of being on the trial. Was this discussion a part of something done exclusively on behalf of those who took part in the trial, along with family members? Or was it perhaps part of private conversation among participants and their family members?
You mentioned the conference call in that same paragraph, but I don't remember any folks from the trial as a part of the conference call, so I'm guessing you were referring to some other way in which you heard from the three women you mentioned.
You've simply got me curious, and I'd love to learn more. If you happen to see this great (no problem if you don't), and, once again, thank you so much for chiming in with your post above. That really is encouraging to see.
May God Bless your daughter with healing hands and let's hope through discovery and knowledge, that I also consider God as the source of such a blessing, to bring forward medications such as PBT2.