discussion group in philadelphia

Many of you wished us well and asked us to report back when we returned.  It was definitely an experience like none other and something I will not soon forget.  Shire, the pharma company who invited us, pulled out all the stops.  They flew us in from around the country, we stayed in a veeery nice hotel (where at the catered meals the servers wore white gloves), took us to dinner at a fabulous restaurant on a ship that is permenantly docked at Penn's Landing, paid us $250 for coming, and thanked US hundreds of times for coming as if WE were doing them a favor.

Now for the important part... we were all skeptical,I know, about what they wanted.  What they wanted was our input.  We discussed what we felt was lacking in the world of UC (physician information, public awareness) and how possibly to rectify these situations.  We discussed what type of info we would like to read about in publications on UC or in an informational seminar (either for patients and/or family members)  Also talked about was how to find support.  They were interested in finding out if we, personally, or our doctors chose the medications we are on and how we decide to try something new.  This company does make Lialda but they only talked about it for 20 minutes. And they were not trying to sell us on it at all.  They wanted to know if we thought their marketing strategies would work, what we would like to hear in an ad, where would be a good place to puts ads.  We were told that this was the first time they had ever done something like this and that they hope it is the start of something big.  They truly want to communicate with patients in order to help us better.  I thought it was funny that one thing we were asked is "How can we get people to come to these?"  They had 12 spots, but could only get 8 of us to come.  I would do it again in a minute.  I hope it really is the start of something big.  

Thanks for all the well wishes.  I think I can speak for all of us when I say we enjoyed it. 

oh, and Dan if you're reading this... That shirt doesn't match those pants.  hahaha...

Thanks very much, Leslie & Darlene, for getting back to us about Philadelphia. It's good to hear that a major pharmaceutical is truly interested in UC patient contacts. If you read Trixy's recent posts about the Rowasa supply crisis, she got good results from contacting Alaven directly. Maybe there is hope after all that we can influence them to help us more-- such as by giving us the 5-ASA rectal foam that Europe & Australia already have among their treatment options. THANKS! (Glad you made it thru O'Hare o.k., Darlene.) / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)

That is so awesome! I am so glad our input is so important and that it was so informational and enjoyable! Thanks for letting us know and next time, I want to go!!

Hi you guys. Good meeting you all too! I know Leslie! I thought this place would always be somewhat anonymous for me!!!! Oh well-I'm glad I met you guys. ( I still went back and read my other threads to make sure I hadn't written anything really dumb!!:) Whew!

I also agree with Leslie. It was a real eye-opening experience. I'm so glad I go the chance to participate. It was great meeting everyone too!