Rough draft

A board to discuss Tcelna as a treatment for Multiple Sclerosis

Rough draft

Postby JanethePain » Mon Mar 09, 2009 1:29 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.
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Postby Lyon » Tue Mar 10, 2009 4:54 pm

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Postby Lars » Wed Mar 11, 2009 9:55 am

Jane,
While I whole heartedly agree with Bob's take on Opexa, I love your energy and determination. After exhausting all other therapy options and admitting my anger towards Opexa, I suppose I would swallow my pride and get back in line. Desperation and "moral code" don't always play nicely. Let me know if I can help. How about us being committed patient and Opexa being Pharma rats?
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Postby JanethePain » Wed Mar 11, 2009 11:19 am

Lyon wrote:I get the idea that the people at Opexa could give a shit about our input, but I do like the letter! Bob


Feel free to snip what you like of it and create your own! And be sure to post. I wield a doggone mean cyber blue editing pencil. 8O :lol:
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Postby JanethePain » Wed Mar 11, 2009 11:26 am

Lars wrote:Jane,
While I whole heartedly agree with Bob's take on Opexa, I love your energy and determination. After exhausting all other therapy options and admitting my anger towards Opexa, I suppose I would swallow my pride and get back in line. Desperation and "moral code" don't always play nicely. Let me know if I can help. How about us being committed patient and Opexa being Pharma rats?
Lars


I'd really like to have a few personal words with some of the Opexa crew who were in charge of our study. They obviously never heard of the old teamwork brouhaha and how important it is in modern business settings. And I'd like to be there IF I could persuade them to tar and feather whomever wrote up that preliminary report that torpedoed OLTERMS.

And like an old dog with a sock, I'm still whining and fretting about our stuff going down the tubes for a measly cash flow problem.

Personal soapbox whine: if money could be found to implant that walking uterus out in California with eight embryos (epithet deleted due to fears of my being thrown off the boards... :-)), why couldn't the money be found to keep Opexa afloat during our study?
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Postby JanethePain » Wed Mar 11, 2009 11:28 am

Lars wrote:Jane,
While I whole heartedly agree with Bob's take on Opexa, I love your energy and determination. After exhausting all other therapy options and admitting my anger towards Opexa, I suppose I would swallow my pride and get back in line. Desperation and "moral code" don't always play nicely. Let me know if I can help. How about us being committed patient and Opexa being Pharma rats?
Lars


Ooops, I was having so much fun on my soapbox that I forgot to finish! :lol: By all means, Lars, start putting together your own letter to the Tovaxin Trinity. 8) Snip from my stuff whatever you like.

I'm operating under the premise that ONE of us will get a response... if not... I might have an answer for that, too! :lol:
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Postby Lyon » Wed Mar 11, 2009 7:54 pm

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Postby JanethePain » Thu Mar 12, 2009 7:39 am

Lyon wrote:I admit that I'm brain dead Jane.....who am I supposed to be sending these letters to? The Michigan trial neuro's office and the head of Opexa?
Bob


No problemo, Bob. I'm chalking my fog up to a severe case of spring fever. A couple of days ago, it was 75 here--a record-breaker. Today we have a serious frost! UGH!

Looks like there are FOUR addresses rather than THREE... have fun! :lol:

Dr. Edward J. Fox
Multiple Sclerosis Clinic of Central Texas
7200 Wyoming Springs Dr., Suite 1100
Round Rock, TX 78681

Dr. Dawn McGuire, MD, PhD
Opexa Pharmaceutical, Inc.
835 Greens Pkwy
Houston, TX 77067

Ms. Donna Rill, Senior Vice President of Operations
Opexa Pharmaceutical, Inc.
835 Greens Pkwy
Houston, TX 77067

Neil K. Warma
Opexa Therapeutics, Inc.
835 Greens Pkwy
Houston, TX 77067

Or send an e-mail to: nwarma@opexatherapeutics.com

As Tiny Tim said, "God bless us one and all!" 8O :D
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Postby Lyon » Thu Mar 12, 2009 8:39 am

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Postby av8rgirl » Fri Mar 13, 2009 9:32 am

Thanks Jane. And if anyone wants to use my last name in the letter, please feel free to PM me and I will give it to you. I have no problem.

I just came from the NMSS Public Policy conference and spoke to a number of people regarding research funding for MS. Funding for private companies was not even a subject that anyone wanted to discuss. Funding under grant writing was, however. I am wondering if Opexa has written for a grant to continue the funding for tovaxin?

I did bring up the fact that the trial had been terminated due to lack of funding to each of my state's legislators during my talk to them. Hopefully giving them the impetus to vote in favor of funding more MS research.
“When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford
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Postby JanethePain » Sun Mar 15, 2009 9:12 am

av8rgirl wrote:Thanks Jane. And if anyone wants to use my last name in the letter, please feel free to PM me and I will give it to you. I have no problem.

I just came from the NMSS Public Policy conference and spoke to a number of people regarding research funding for MS. Funding for private companies was not even a subject that anyone wanted to discuss. Funding under grant writing was, however. I am wondering if Opexa has written for a grant to continue the funding for tovaxin?

I did bring up the fact that the trial had been terminated due to lack of funding to each of my state's legislators during my talk to them. Hopefully giving them the impetus to vote in favor of funding more MS research.


With luck, we just might get an inkling of what the Opexa Crew is planning IF those we write letters to decide to pass along the info.

Common sense seems to have NO role in this equation whatsoever, does it? 'Cause if I were a mover and shaker in Opexa, I'd want the 150 lab rats informed and on board at each step of the process so as soon as the green light came on, we'd be ready to take off again.
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