This Is MS Multiple Sclerosis Knowledge & Support Community

oo

Maggie,

Have your neuro. contact Opexa Therapeutics; specifically Shannon Inman. I believe that is her name. I believe she would be the contact for the trial because every time I talk to my research coordinator about the protocol for the extension study, he mentions her name. That would lead me to believe that she is coordinating the trials from the drug manufacturer's point of view.

Lyon wrote:I'll have to check on RTL1000 because I don't know what it is offhand.

See http://clinicaltrials.gov/ct/show/NCT00411723?order=1 for a little info on RTL1000. It's in the early phase 1 stage to look at safety and uptake on a limited number of participants. From the brief description it sounds like its function is to prohibit MRTCs from binding to myelin. So, it doesn't resemble Tovaxin in that RTL1000 is aimed at trying to get the MRTCs to play nice rather than eliminate them.

Mike

You all are so knowledgeable about Tovaxin that I keep writing and erasing what I am trying to say. Forgive me if I sound stupid.

I had asked a friend who is an investor. He said if the drug is doing as well in the trials as I described to him, then a bigger corporation will pick it up. Is that they only way this is going to become a reality? Are we at the mercy of a big corporation? Tell me Opexa has a plan?

If this takes off, I would imagine Opexa will be known as Biogen, or Pfizer, or Serono......

MaggieMae wrote:You all are so knowledgeable about Tovaxin that I keep writing and erasing what I am trying to say. Forgive me if I sound stupid.

Maggie, don't worry about how you sound because this forum is about getting information out and for answering questions and as the saying goes, there are no stupid questions. Just remember that most of the folks in the Tovaxin forum are heavily involved in the current trials because they are either in it or are close to someone who is. So, we've all thought, read and questioned just about all that we can regarding Tovaxin.

Mike

Thank you for responding to my questions. I had contacted Shannon Inman and Dr. Loftus over a year ago about the trial and I gave them some basic info on my husband and his sister. I knew the trial was for relapsing/remitting, however, since the initial trials included secondary progressive, I am hoping there will be a Phase III and it will also include secondary progressive. I'm just afraid that it could take years for a Phase III. I will give the info to our neurologist and ask (no beg) him to inquire about becoming a site for Phase III.

If any of you feel that there is something we could do to help the process, let me know. Or am I being naive?

MaggieMae wrote:... If any of you feel that there is something we could do to help the process, let me know. Or am I being naive?

You're not being naive at all, Maggie. This whole thing is a process--we learn by doing--and sometimes that means slamming into a brick wall or three along the way.

In a post somewhere around here, Tim suggested writing to the Opexa people with our observations and suggestions. That was one of those V-8 moments for me... "why didn't I think of that myself!??!?!?!"

So I pull up my rough draft Word Document a couple of times a day and add a line or two. When I get the draft version ready for comments and major editing, I'll post it so y'all can help me correct it before I send it off!

Look a the brain on Janet! That is a great idea! Lets all wright a letter to Opexa. Lets all work to get Tovaxin on the road for FDA approval. I would be very excited to contribute in any way I can. Thanks.

oo

When I last talked to my neuro, in the visit after I told him about our site, he had said that he had forwarded our web address to a few drug companies. He thought it might benefit them to hear some of the questions and concerns we were voicing So, if They are smart, They should be listening. Of course, it doesn't hurt to make sure they are they get the message.

Heather

Maggie,

We may be at the mercy of a big corporation, but I don't really care if that's what it takes to get to market. Unfortunately in the free market, that is likely to happen. I say unfortunately because we all want companies to do things for noble reasons, but the reality is they do them for the money. I feel there is just too much steam from Tovaxin that will make it attractive for one of the biggies. The first novel approach with stem cells for MS is probably mighty appealling; especially with the other autoimmune possiblities. Hey, Daddy Warbucks can get richer, I just want to stop getting worse.

Hi to all,

I just reread this thread, and I thank you for your kind words. I started this thread to give everyone a slap upside the head about inflated expectations. I think I may have actually achieved that. I do want everyone to have a positive attitude about Tovaxin, but I am concerned that my improvements have been blown out of proportion, thereby raising everyone's expectations to a level that would be difficult to attain.

You have made me smile as I read about my new hero status. I feel about as heroic as the first person who pulled on a cow's teat and said, "hay, I think I will drink some of that stuff". I don't know what I would put on my cereal if some brave soul had not made that giant leap of faith and downed a squirt of milk. I didn’t have a leap of faith, I had a fatherly push.

Bob wanted to know what school I root for. That is an easy one. I went to a small school in the U P of Michigan called Suomi College. It was founded in 1896 by Finnish immigrants, and proudly used that name for 100 years. The president and board of trustees, decided that Suomi was outdated and probably misunderstood, so they changed the name to Finlandia University. So now on game day, no matter who is playing, I proudly wear the colors of old F U.

I am working on a post about masking of WBCs, and what you might want to do before being tested for MRTCs or giving a bag of blood for vaccine. All of you in the study will be giving a bag of blood at week 52 from which your new vaccine will be made.

I bet my last statement setoff some light bulbs. Yes, at week 52 you will give another bag of blood, and 8 to 12 weeks later, you will for sure be getting the real thing. I assume most people realized that at week 52 the vaccine would not be ready and waiting for you.

I also plan to explain a little more about Tovaxin. I am sure Bob will find what I have to say interesting, and ask 10 questions for every new answer I give. Sorry Bob, the answer window will be closing after that post.

I would like to know if anyone in the current study received vaccine before November 1, 2006. I only ask that because I want to post my information at least 6 weeks before the first anniversary of anyone’s first treatment.

I am heading back to my phone booth to work on my post. Keep whispering my name around the campfires, and Bob, keep working on my ballad. Disney’s Davie Crocket should provide a good tune for it.

oo

Hi Bob,

You can probably still enroll for fall classes.

http://www.collegeprofiles.com/suomi.html

http://en.wikipedia.org/wiki/Finlandia_University

Finlandia University
601 Quincy Street, Hancock, Michigan 49930
877-202-5491 | http://www.finlandia.edu

Hello and welcome to the Copper Country! Finlandia University in Hancock, Michigan, is a baccalaureate degree-granting, co-educational learning community dedicated to academic excellence, spiritual growth and service. Founded in 1896 as Suomi College, Finlandia is one of 28 U.S. colleges and universities affiliated with the Evangelical Lutheran Church in America and the only private, not-for-profit institution of higher education in Michigan’s Upper Peninsula. It is the only university in North America founded by Finnish immigrants.