Rough draft
Posted: Mon Mar 09, 2009 12:29 pm
Please comment so I can do the necessary editing. After I get your-all's approval, I'll be sending this to Dawn McGuire and Donna Rill of Opexa and Edward Fox of that central TX MS Center. Here goes:
Four months ago, when Opexa Therapeutics pulled the plug on Phase II-B of Tovaxin, a lot of people were shocked and very unhappy. Especially when some of them—us, rather—had, over the course of the study, become cheerleading advocates.
My name is Jane **** and I was one of the Tovaxin lab rats at the Columbus, Ohio study site. In fact, I had just received my second round of vaccine a few days before I got the bad news of the cancellation on a set of message boards.
As soon as the dust settled, I decided I wasn’t ready—or willing—to give up on Tovaxin just yet. Thanks to the Internet, I’ve been able to follow the saga of Opexa during these last four months and spent a lot of sleepless nights trying to come up with some ideas about what to write to you and your colleagues while you’re re-grouping.
Two items for your consideration, if I may:
1 Please think about contacting the “lab rats.” Believe me, we have a VERY strong interest in seeing Tovaxin succeed. For many of us, reading the Internet account of Tim Wesner’s experience was the primary reason we nagged our neurologists and jumped through umpteen flaming hoops to get slots in Phase II-b in the first place.
2 You have a talent pool from within these ranks: Cheryl **** was one of the primary advocates and organizers when the time came to getting Tysabri back on the market. The overwhelming anecdotal evidence from those first Tysabri patients was very largely responsible for its return to the market—and Cheryl pretty much spearheaded that event. Anecdotal evidence isn’t scientific, certainly, but it has its place and I don’t think our Tovaxin story is complete without it.
Even though our numbers are far, far fewer, we’re a very bright and proactive bunch (read: “loud and pushy”). Please coordinate with us and allow us to do what we seem to do best: get those anecdotal ducks in rows so we can engage in this process, too.
I know there’s a lot of work to do before anyone gets a green light on another start-up. Personally, I think that if all of us lab rats could endure the math (cognitive skills) portion of the study without a whimper or a complaint, we’re primed and prepped for another challenge.
We’re up to it. Please allow us to do our part so we can all see Tovaxin back in our lives sooner rather than later.[/i]
Four months ago, when Opexa Therapeutics pulled the plug on Phase II-B of Tovaxin, a lot of people were shocked and very unhappy. Especially when some of them—us, rather—had, over the course of the study, become cheerleading advocates.
My name is Jane **** and I was one of the Tovaxin lab rats at the Columbus, Ohio study site. In fact, I had just received my second round of vaccine a few days before I got the bad news of the cancellation on a set of message boards.
As soon as the dust settled, I decided I wasn’t ready—or willing—to give up on Tovaxin just yet. Thanks to the Internet, I’ve been able to follow the saga of Opexa during these last four months and spent a lot of sleepless nights trying to come up with some ideas about what to write to you and your colleagues while you’re re-grouping.
Two items for your consideration, if I may:
1 Please think about contacting the “lab rats.” Believe me, we have a VERY strong interest in seeing Tovaxin succeed. For many of us, reading the Internet account of Tim Wesner’s experience was the primary reason we nagged our neurologists and jumped through umpteen flaming hoops to get slots in Phase II-b in the first place.
2 You have a talent pool from within these ranks: Cheryl **** was one of the primary advocates and organizers when the time came to getting Tysabri back on the market. The overwhelming anecdotal evidence from those first Tysabri patients was very largely responsible for its return to the market—and Cheryl pretty much spearheaded that event. Anecdotal evidence isn’t scientific, certainly, but it has its place and I don’t think our Tovaxin story is complete without it.
Even though our numbers are far, far fewer, we’re a very bright and proactive bunch (read: “loud and pushy”). Please coordinate with us and allow us to do what we seem to do best: get those anecdotal ducks in rows so we can engage in this process, too.
I know there’s a lot of work to do before anyone gets a green light on another start-up. Personally, I think that if all of us lab rats could endure the math (cognitive skills) portion of the study without a whimper or a complaint, we’re primed and prepped for another challenge.
We’re up to it. Please allow us to do our part so we can all see Tovaxin back in our lives sooner rather than later.[/i]