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Posted 10/21/2008 6:31 PM (GMT 0)
So I received an interesting call this morning. I had a representative from BIOGEN call me. They want me to talk about tysabri and crohn's disease to groups of about 20 to 30 people. They said my sucess with tysabri and my involvement in managing crohns makes me stand out. They are sending me a consent form and then setting up a call to talk with me. What do you guys think about this?
Posted 10/21/2008 7:11 PM (GMT 0)
Wow. I thought you were going to go off of it because of your concerns with it? How are you feeling these days?
Posted 10/21/2008 8:16 PM (GMT 0)
The was my original intent. I have an appointment with my GI in November and I plan on discussing it then but I would have to say I think Im going to stay on it becuase of the results I have seen. In the last two months I have felt 99.9% back to normal.

Posted 10/21/2008 9:25 PM (GMT 0)
Hi Sounds like you have improved alot. I think it is up to you and is it something you feel like doing? For those that have to go on it ,it might be helpful hearing how you did and add the support that they might need to get them threw it if you beleave in it go for it. lol gail
Posted 10/22/2008 2:41 AM (GMT 0)
Glad to hear you are doing better. Are they willing to pay you for their marketing? Not to say you would not be willing to endorse a drug for us crohnnies that you knew was a semi-miracle. I don't know. This would be a tough one for me because alot of the BIO drugs we are on they don't really know the long term effects yet. I would be afraid of endorsing something that ended up wreaking serious havoc with someone else's body later down the line. Do let us know what you decide. I think this is an important issue.
Posted 10/22/2008 2:54 AM (GMT 0)
If they won't pay you may they can donate to a local organization in your name such as the CCFA or loacl support group, or sponsor a patient education event at you local hospital where they bring in a specialist to speak. I did one with my hospital before I started working for my doctor and the event was called "Relationships, intimacy, and fertility in IBD." We flew in a specialist from California to handle the clinical aspects on intimacy and fertility, and we had a local sex therapist talk about both relationships and intimacy. First the sex therpist spoke for 30 mintues then the GI from California then we had 30-45 minutes of q&a. There were 70 patients, we had it a a ballroom where appetizers and drinks were served. It was all sponsored by the pharma company and they didn't speak we just acknowledge them in the opening and thanked them at the end.

Food for thought
Posted 10/24/2008 9:39 PM (GMT 0)
Well I got a call today from Ryan True Health. They are the group that wants to talk with me. They are going to set up a phone appointment and also want to fly me out to New York to do a video interview and more. From what I could gather I would be part of an ambassador program and my interview and story would be on tysabris website. Im still not sure but I think Im going to do it.

Posted 10/24/2008 9:46 PM (GMT 0)
Certainly sounds interesting. lol gail
Posted 10/31/2008 10:01 PM (GMT 0)
Well I thought I would give you guys a update. I have decided to do this.I will be going out to new york to meet a dr and another paitent. They will be doing a video interview and some photos and Ill be meeting with a creative writer to start working on my story. It all sounds pretty cool but I guess Ill have to wait and see when I get there.
Posted 10/31/2008 10:40 PM (GMT 0)
Hi Best Wishes . lol gail
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