Hi -
A few of us went to this on Friday (very nice meeting you Korey, Mike, and Jaki!)
Here is the link to the broadcast if you'd like to hear what was discussed:
https://www.youtube.com/watch?v=DSujOx_qT0M
The beginning is cut off a little. The first speaker is Cecelia Soderberg (http://www.ceric.se/Research/Cecilia/Cecilia.html) who was asked if her studies of Valcyte were only effective on newly diagnosed GBM. She said 30 of their subjects were recurrent GBM and that all showed improvements.
I also attended the earlier portion geared towards medical professionals. I am waiting on that link and will post once I receive it.
Thanks.
Annie
I was going to post about this. I watched it a couple days ago. I try to be optimistic about the future, but this panel was about as depressing as one could be. They were solemn and sounded defeated. It's obvious to me that substantive change is going to have to come from some other avenues. The current system and its enmeshment with bigpharma and the self interest of pouring money into "keeping our labs going" is not going to cut it. Where can we mobilize?
ReplyDeleteI was let down too, in particular by the suggestion that we all privately fund a trial for Valcyte. The earlier talk (that I don't have a link for yet) that Cecelia gave on Valcyte was inspiring.
ReplyDeleteAnnie, please do publish Cecilia's talk when you get it. I have been trying to find it, but haven't been able to. Thank you.
DeleteThank you all for posting!
ReplyDeleteI am not so optimistic about things discussed there.
If the most poverfull country "USA" is strugling with "no money" for trials i am wondering what would we hope for... little coutry with no heard about glioblastoma histopathologic test and markers .
. I just made another IRM to my hubby , and is no changes for the last one in November 2015. so we are stil hoping for something good hapening with him. God Help US!