I am in a group in my area that is for people with MS who are in their 20's and 30's. I found out about it through my infusion site for Tysabri and its run though the National MS Society. We meet aproximentally once a month and just talk about whats going on, share experiences, ect...its like a support group in a way. Anyways a few minutes ago I got this email...
"Please plan on Oct 14th for our next meeting. We will be meting at Delmonico's restaurant on E. Henrietta Road. We will have a speaker and dinner provided for us courtesy of Serono. Please let me know if you will be able to attend."
Ok so I read it and thought yum I love Delmonicos...and oooh free dinner...who is Serono? Just a quick google search and I quickly find the website that says "Merck Serono is a market leader in the treatment of Multiple Sclerosis (MS) with Rebif®, approved for the treatment of relapsing-remitting MS in over 80 countries worldwide. In the United States, we market Novantrone® for worsening forms of MS."
Oh, its a drug company, yipee...is it just me or is this not really a appropiate sponser for a support group meething...and the guest speaker, who is that going to be? A drug rep?
My roommate and I are just kinda like having a wow, is seriously for real, moment.
Stephanie - just started reading your blog recently. I like getting the insight into your life as a very young person with MS (my wife didn't get diagnosed until she was in her early 30s).
ReplyDeleteIt sounds like the free dinner comes with a cost ... a marketing pitch from the makers of Rebif. If it's a nice way to socialize with others like yourself and get a free meal, I say go with it. :-)
Hi Stephanie,
ReplyDeleteThe support group is run by NMSS. Patient support and education are part of the mission of NMSS. NMSS programs are funded in part by public donations and by grants from pharmaceutical companies. This is not unique to NMSS; other MS organizations also receiving funding from pharmas.
It is very much unlikely that the speaker for the support meeting will be a pharma rep. The speaker may be a professional who will talk about one aspect of living with MS or current research, or something like that.
Like Cranky says. Go socialize and get a good meal for free. Then of course you should write about what the meeting covered. ;)
I like the social edge to the meeting. I think getting together with others in your same situation, no matter what it, is very therapeutic. You should go and share and listen to others. Then for sure, come back and talk about it. Let the next person who wonders know what its all about.
ReplyDelete