I received this email today from "someone" at the National MS Society via BrainCheeseMS@aol.com :
-----Original Message-----
From: Olivia.Lindly@nmss.org
To: BrainCheeseMS@aol.com
Sent: Sun, 4 Mar 2007 11:53 AM
Subject: MS Awareness Week
MS Awareness Week begins March 5, and with it the beginning of a whole new movement by and for people with MS.
I am asking that you show your support for the MS movement by adding an html button to your blog and passing it on to others you think should also join the movement.
You can choose your button by visiting www.nationalmssociety.org/buttons. All necessary code is provided there.
People with MS understand something that others don’t – that moving isn’t always a guarantee. Help us to give that guarantee back and move us towards a world free of MS.
Olivia Lindly
Marketing Department
Marketing Department
National Multiple Sclerosis Society
733 Third Avenue
New York, New York 10017-3288
Tel 212.476.0444
Fax 212.986.7981
E-mail: Olivia.Lindly@nmss.org
733 Third Avenue
New York, New York 10017-3288
Tel 212.476.0444
Fax 212.986.7981
E-mail: Olivia.Lindly@nmss.org
Well, as you can see, I "did as I was told"...I smacked the "bit too big" logo over there to the left! You can now just click on that logo and be redirected to the National MS Society's web page to become "part of the movement". This is where I began to scratch my head.
I decided I simply could not let this email from the NMSS go unanswered, however. I found myself becoming more and more paranoid and I began to wonder if the MS POLICE had been monitoring BRAINCHEESE!! Was I about to be thrown into MS JAIL for my sarcastic, sometimes off color remarks about MS and even the Society? Would someone representing the Society via a drug company be coming to rip the needle out of my arm during my next Novantrone infusion because I have become "unworthy" of treatment in the eyes of the MS gods???
So, I calmly sent this email back just a few minutes ago:
Dear Ms. Lindly,
I received what appears to be a mass marketing email from the NMSS, requesting I place a "button" to redirect people to the Society from my blog/journal, BRAINCHEESE. I will happily place the logo/redirect to my AOL Journal, but I am quite curious how you located my blog in the first place?
Several months ago, I wrote the NMSS president an email regarding the multitude of MS bloggers that exist on the Internet and offered some insights into this expanding communication tool among those of us living with Multiple Sclerosis...I never heard back from her. I recognize Ms. Nelson is an extremely busy person, but I had hoped someone from the Society might, at the very least, acknowledge my email.
As the Internet continues to expand itself and become available to nearly everyone in the United States, people living with MS are also expanding their social circles and reaching out to one another via emails/journals/blogs/web pages. We (MSers) are no longer forced to feel isolated or remain anonymous to one another. We are creating a network of information about the disease, its treatments, and our personal experiences with MS via the Internet. Our opinions and our experiences are quite variable (such is the nature of the disease itself!) but, for the first time in history, AVAILABLE to one another with only the click of a button. This format should be viewed by the NMSS as an extremely vital communication tool and a way to spread information about MS globally.
My hope is the National Multiple Sclerosis Society will soon work to unite and integrate each of us with MS to one another via the Internet if we choose to participate...it is my personal belief that knowledge is power and by sharing our experiences with one another, we will have the wisdom to overcome Multiple Sclerosis, either by cure or conquer.
Sincerely,
Linda (Last name removed for CHEESE readers...because I'm a very private person! LOL)
Seattle, WA
As I sit here now at the computer staring at the NMSS logo, I am amused. First of all, who consulted the color chart for this? Why do WE get brown and orange when those Breast Cancer Awareness people get all the "pretty" colors?!? (Yes, I'm STILL jealous of their marketing department.) And, when you click on the logo and go to the NMSS site, you see various themes about "joining the movement".
OK, I'm a nurse AND my mind often wonders to bodily functions because I lack the cognitive processing to find humor in complicated jokes. But really...JOIN THE MOVEMENT? I immediately went from the brown color of the logo, to the word "movement"...BROWN + MOVEMENT =??? I'm sure you get the picture without further explanation needed. LOL
Did the NMSS consult those of us with MS about this new marketing strategy? And if they did, are we with MS REALLY this bland?!? Do we seriously lack the white matter cells in our brains responsible for creativity and humor?
If the National MS Society wants to get me personally on board with "the movement", they're going to have to try a bit harder. I'll leave the logo-thingy over there on CHEESE for the time being and I DO encourage you to click on it and check out the website...I encourage ALL opinions/attempts at getting the word out there about Multiple Sclerosis...and please don't misunderstand me...I BELIEVE THE NMSS DOES GOOD WORK FOR MULTIPLE SCLEROSIS.
I just think it's time we start "shakin' it up" when it comes to MS AWARENESS...I'm still pushing for our dayum parade!...
3 comments:
I got a sticker in the mail the other day. They want me to put it on the car's windshield... Why? What do they think this will accomplish?
Unlike you I don't think much of the NMSS. I have never heard of them actually DOING anything for anyone with MS. Research is nice and I do appreciate that, but for my dollar the MS Assoc. of America is waaaay more pro-MSer.
The MSAA actually paid the entire bill for me to have my diagnostic MRI done as well as got me a scooter free of charge when I was having such a hard time getting around (that heat/humidity dayum near killed me <grin>) when I lived in Texas. With the MSAA, all you have to do is ask and they're right there for you! By comparrison, the National MS Society told me that they could do nothing for me because I lived in the wrong county. That's right... I didn't live in Houston where their Center was so I was turned away. They wouldn't even send me an information packet about MS so that I'd know what I was dealing with! That's cold.....
Have fun with your button. I for one won't be clicking on it. I'll wander over to the MSAA site instead. :)
pjorpeej--thank you for telling us about MSAA--I don't use the MS Society in my area either--I get requests for money all the time for all of their fund raising events but they have nothing to offer me now that i am disabled. I use other agencies to navigate this new world.
when I start reading your entry, my first thought was...wellthank you very much but I had my movement this morning and did not want to join another one today, the first was nmore than enough, thank you! and those colors stink!
Becky
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