NEW Botox Spokesperson...

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Permalink Reply by Ernie on July 9, 2009 at 11:42am

Maybe we could get together sometime and do a little brainstorming. I would hat to put out the idea too soon without a game plan of some sort at least. Meanwhile, if anyone else would like to participate, I'm sure that we could find a way to get everyone who wants involved.

Maybe not the best time to mention this but.....
Our time for doing a lot of organizing and such will be at a minimum for a while. I am frantically working to get our house in order for the market before we lose it to foreclosure. I've been out of work for over a year and the savings is all but gone. I don't even know how long we'll be here or where we will end up.

Ernie

Permalink Reply by Lene on July 9, 2009 at 2:56pm

I am all for any group thing, however remember some of us cannot travel, stand for a long periods of time,walk without some help..etc and being out of our element may bring about some stress, dealing with hotels, luggage etc. I myself would not mind being infront of the camera. In my earlier years I did some advertising for Jazzersize on a television commercial,several of them....
I just am not sure about the travel..I tend to have more tremor when out in the world, shopping etc. My head will move faster than the jet...(of course there are drugs!!)
IDEA!!!! We could all contact our local newspaper and with the help of Beka, Becky, Jen or someone that know how to create a news release then we could just read it with all the peraniant information while the camera is on us.. I have several newspaper I could call...and see if they would come over with the camera for television spots in the news...I did call once but no one called me back... I am just brainstorming...

Permalink Reply by Jodes on July 24, 2009 at 11:43pm

Hi! I'm completely new this, so hope I don't put my foot in my mouth.
I used to work for a pharma company and have several Allergan colleagues...it is interesting, from what I have heard, that the company sells more units of Botox for therapuetics than cosmetics. However, from a marketing and money-making standpoint, they don't need to put in a lot--those patients finding relief from Botox don't need to be recruited. We are who we are. It is on the cosmetic side that the market share can grow--hence Allergan's attention to it.

Permalink Reply by beka on July 13, 2009 at 1:15pm

WHAT NEXT ???

While some celebs might head to their nearest plastic surgeon for a botox touch-up, Oscar-winning actress Rachel Weisz says the face-freezing injection should be "banned" for actors."It should be banned for actors, as steroids are for sportsmen," Weisz told the UK Harper's Bazaar.
"Acting is all about expression; why would you want to iron out a frown?" said 'The Constant Gardener' and 'The Mummy' actress.

Personally, dont even know this actress.. What next ...?

beka

Permalink Reply by Jenn on July 21, 2009 at 1:27am

What do you mean Botox isnt just for the glamorous... WHAAAAAAT? I'm glamorous!!

Seriously.. I agree with Ernie (and Beka) The more we stand up, the more people notice.

I have put myself OUT THERE.. at the risk of my career (I'm a model) because I know dystonia needs more recognition.. BECAUSE it took 15 years for me to find a doctor that had even heard of writers cramp.

unacceptable.

I understand vanity.. I understand distance. But.. at the risk of sounding callous.... STOP MAKING EXCUSES. everyone can do something.

I get paid to look good. How many jobs do you think I lost because I posted pictures of me bent over with a cane?
I am unable to drive longer than 2 hours.. but you know I made it to DC to lobby for dystonia research.
I hopped down the steps of a congressional building because I couldnt walk down them.
Write your congressmen, drop pamphlets locally, write the local newspapers.. organize fundraisers...

We all deserve to put more attention to this disorder. We are all beautiful - no matter how bent we may be, there's no reason to be ashamed to speak up.

The best thing happened today. I was talking to one of my 22yold model friends.. 5'10 12pds you know... could really care less about anything except her next photo shoot....and I mentioned dystonia twitter day.. and how many ppl I read were going to participate.. and she asks..

her: How many dystonia friends do you have?

Me: Oh.. around 100.

her: REALLY? Oh it must not be that rare if you made friends with 100ppl with it.

me: I laughed.. Well... 300,000 ppl in North America have it

her: Well thats NOT RARE! :P


now... how many ppl could YOU have the same conversation with

Permalink Reply by bkaren46 on July 21, 2009 at 10:20am

I just called and spoke with a representative from http://www.allergan.com/ and I mentioned that I hurd about a new spokesperson for Allergan and wondered why they don't talk about Dystonia since there is about 300,000 in north america alone with some form of Dystonia. And David the rep said he agrees that Dystonia should also be added to the campaign. He wants me to call the Marketing Dept. at 800-347-4500 he said if a bunch of us call asking this question he said we would have a good shot towards marketing for Dystonia. Please let me know your thoughts before I call the marketing dept. Is this worth a shot?

Permalink Reply by Jenn on July 21, 2009 at 11:18am

I'd do it :P

but it seems that public awareness about dystonia should be increased also.. otherwise they would just be marketing to us.

Permalink Reply by beka on July 25, 2009 at 11:57pm

Did you really do this BK ?? As now, I am getting emails from Allergan Corporate offices regarding this thread. Am having a discussion with them. Hopefully can sway them that the efforts described by people in this thread are there own- I really had no idea people have been calling their corporate offices. What have they been saying ?
What level rep was this David at - do you know ??

There are more than 1 million people with dystonia if you take in to account drug-induced ones, secondary forms, rare forms, the undiagnosed etc...

beka

Permalink Reply by bkaren46 on July 27, 2009 at 8:06am

Yes I did Beka. And yes others have called, but not sure how many.

Permalink Reply by chyvonneb on July 21, 2009 at 3:07pm

Great conversation....I like many of the ideas that you all have suggested. I’m glad to hear about BKaren’s efforts in contacting Allergan. I'm on board. Let me know what I can do.


Personally, I have a few illnesses that make me feel lonely and misunderstood. Besides Dystonia, I have Graves' Disease and other issues. Some days I truly feel like an oddball. But, I continue to talk about it on my blog and with other people. Some people are unfortunately not going to listen to what I’m sayin’. But, for those who do listen, I am helping to spread the word on this cruel, misunderstood disorder.

I often wonder why some disorders get more publicity and understanding than other disorders. With Graves' Disease, I really don't think they (doctors/researchers) know enough about Autoimmune Diseases. More is known about Diabetes. But, what about Sarcadosis, Graves’ Disease, Hashimoto’s Disease, etc. So, they ignore certain things instead of admitting to lack of knoweldge. Same thing with Dystonia. Doctors attempt to TREAT it, but they don’t fully understand it. But, why should we suffer silently just because THEY don’t yet understand the disorder. We didn’t do anything to get this disorder. It came to us.

On the other hand, I have a friend who has MS, another Autoimmune Disease. In my city, there are many services (although never enough) and resources for people who have MS. My friend gets free Aqua Therapy through the MS Society, she gets free items such as cooling packs for when it is hot, etc. Her MS neurologists are located in a separate building from the main hospital--there's research going on and services being provided. Wouldn't that be nice?

With Dystonia, I get my Botox and am sent on my merry way. No services offered--barely a conversation with the Neurologist. This just isn’t right. Publicity, Services, and General understanding means a better piece of mind for people who have disabilities.

We all must do our part. By starting this site, Beka has certainly done her part. By being a part of this site, we are doing our part to help each other. Some of us have started blogs, some of us have contacted newspapers, and we shall keep talking about Dystonia to make people aware of this disorder. We must!

I don’t know what it’ll take. Will it take starting a campaign that focuses on all Movement Disorders (i.e. Tremors and Parkinson’s included). Bottom line—something has gone wrong in the brain. So, people need to be educated, because it could unfortunately happen to them too.

I give Oprah credit. I give the Today show credit. But, we cannot let it be another five years before Dystonia is discussed in the media. Collectively, we shall and must come up with something.

Permalink Reply by chyvonneb on July 21, 2009 at 3:16pm

P.S.

I just called the Marketing Department of Allergan and I was connected to the voice mail of D. Gardner (spelling?) I left a message stating that I hope that there will be publicity regarding Botox and its therapeutic usage for people who suffer from Dystonia. B.Karen, thanks for the info. I hope many of us we'll call. "There is power in numbers!"

Permalink Reply by bkaren46 on July 21, 2009 at 8:05pm

Well I just got off the phone with Lisa she is Debbie Garner's Assistant. I said I knew they were getting ready to start a marketing campaign and asked why couldn't market Dystonia and than botox can be talked about as one of the treatment options for Dystonia. So Lisa transfered me to Debby Garner head of marketing, :-)
I was told she is head of marketing. Phone#800-347-4500 I left a message with my name and number, I will keep trying to reach her. I will never, never, give up. Maybe something good will come out of this. If anyone has any advise please feel free to let me know. This is the 1st time I have tried to do anything like this, and it sure feels good for our Dystonia family.

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