Get your cyber blue pencils at the ready and have fun! If I don't have to do TOO many re-writes, I (we) might get this out by week's end!
God Bless Us One and All...
My full address
Their full address w/their exciting titles, of course
Dear Dr./Mr./Ms. So-and-So:
My name is Jane ____ (not “the Pain” because this is VERY official, dontcha know?) and I was a patient in the Tovaxin clinical study located in Columbus, Ohio. There’s no practical reason to re-hash Opexa’s reasons for discontinuing this study—that’s an exercise in frustration and gets me absolutely nowhere.
End of story? I’m not ready to concede defeat just yet.
Why, you may ask? If there’s anything that “is” true in today’s technical world, it’s the fact that the Internet has changed the range and scope of available information to the public—especially for a group of people I fondly refer to as the Tovaxin Lab Rats.
Are we a support group from one study site? No, indeed. We’re a support group from ALL over the country, and this is where we come together and do business:
Now while I’m certain we have a lot of “drive-by” readers, we don’t have a quorum of the Phase II Tovaxin-ites by any stretch of the imagination. By and large, these few of us are active and talkative but I’m sure a lot of study subjects have no idea where we are and what we’ve been discussing the last few years.
I… we… would love to hear/read from other study subjects. And from all the physicians, nurses, nurse practitioners—anyone, everyone, who has been involved in this study—for better or for worse.
Because of privacy issues, it would be inappropriate for me to ask you for patient contact information.
But I would like to request that you pass along this information to your study subjects and to site personnel in your practice. And here’s why:
Because TERMS has been reported (with devastating consequences) to the neurological community with mind-boggling statistics and number crunching, it seems as though no one was interested in asking for information from the patients—that anecdotal evidence that makes up the other side of the story.
And I haven’t read any information yet from the (most often) sympathetic and enthusiastic professional medical community such as yourself. We couldn’t have done what we did without you. Your experiences with us and Tovaxin are very important to us, if we have a hope of getting it back.
So will you pass along this information (and my contact info) to your study subjects, please? I/we (the other “usual suspects”) hope to put together some information of our own and present a finished product to large pharmaceuticals already involved in MS research.
Do we need pointers and advice? Absolutely! Please consider this your engraved invitation to join us!
I look forward to reading from your study subjects and from all the rest of the personnel involved from your practice. With a lot of organization and patience, we might just be able to get Tovaxin back on track under another pharmaceutical aegis and roll this parade into Phase III without losing too much time.
Many thanks for your time.
(I promise not to sign these e-mails and snail mails “Jane the Pain”).