What are We doing wrong in Awareness Efforts for Dystonia ?
Hello to All-
I hope all of you will consider adding your input to this highly charged question. It seems that despite a film 'Twisted' having been created, T-shirts, Crocs, Banners, Postcards, Magnets, Brochures having been developed including PSAs by Rocker Alice Cooper distributed nationally and other media like Dr. Oz Interviews; the basic general public STILL does not know or has even heard of the word Dystonia; unless you somehow relate it to the actor Fox, who has an entirely different disease ( and mind you, has raised TONS of money over the past 10 years for PD research ). Are we doing something wrong in Awareness efforts ? What more can be done ? How? Why aren't things working today ? After 25+ years ??? Are we not selling dystonia well enough ? Is all too complex ? Not enough sellers versus buyers or listeners ? May be we are doing things right ???
Please Advise !
beka
I hope all of you will consider adding your input to this highly charged question. It seems that despite a film 'Twisted' having been created, T-shirts, Crocs, Banners, Postcards, Magnets, Brochures having been developed including PSAs by Rocker Alice Cooper distributed nationally and other media like Dr. Oz Interviews; the basic general public STILL does not know or has even heard of the word Dystonia; unless you somehow relate it to the actor Fox, who has an entirely different disease ( and mind you, has raised TONS of money over the past 10 years for PD research ). Are we doing something wrong in Awareness efforts ? What more can be done ? How? Why aren't things working today ? After 25+ years ??? Are we not selling dystonia well enough ? Is all too complex ? Not enough sellers versus buyers or listeners ? May be we are doing things right ???
Please Advise !
beka
Tags: awareness, cause, disease, dystonia, funding, marketing, public, relations, research, tools
Replies to This Discussion
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Permalink Reply by beka on -
Well, here may be something to think about ..
Is it a drug in search of a disease, or simply an affliction in need of better publicity?
Read this article from the NYTimes :
http://www.nytimes.com/2005/05/09/business/09avanir.html
No- never heard of the drug , nor has it come to market ...
beka
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Permalink Reply by beka on
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I just read this - and wondered why the bigPharma companies like allergan wont engage in a Botox Ad for cervical dystonia...
Disease mongering" -- according to a paper written on the subject in the PLoS Report mentioned above -- is "the effort by pharmaceutical companies (or others with similar financial interests) to enlarge the market for a treatment by convincing people that they are sick and need medical intervention."
Some "diseases" that the authors of the report consider "mongered" include:
Restless leg syndrome - Prevalence of rare condition exaggerated
Irritable bowel syndrome - Promoted as a serious illness needing therapy, when usually a mild problem
Menopause - Too often medicalised as a disorder when really a normal part of life
Link :
http://collections.plos.org/plosmedicine/diseasemongering-2006.php
Take a look at the pic on the right of the above website...I feel like that sometimes...
beka
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Permalink Reply by beka on
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Keep raging..and saying what is on your mind.. It's time everyone else with dystonia did as well. That might induce change . No need to apologize for saying what's on your mind, Sparky...
Independent Voter -
Beka
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Permalink Reply by beka on
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This should give a moment to pause and think... How restless leg syndrome got such huge media attention...
May be we should be doing the same ???
Link : http://medicine.plosjournals.org/perlserv/?request=get-document&...
beka
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Permalink Reply by Robin Wood on -
Beka,
It seems like the pharm. folks pick conditions or deseases that are easy targets, dystonia is far to complex of a condition for them to mongeral and convince people that they have it, which to me is a plus because I don't think any of us would want to have the dystonia name labeled in the fashion the author speaks of in the article.
Yes, if the Botox people did a huge add compaign for their product in controlling dystonia it would certianly put the name dystonia out there, but it could also be very misleading in that not everybody responds to botox nor does everybody respond the same to any of the meds that are used to treat dystonia.
And the biggest issue I see it that dystonia is so much more then just ST and I'm sure none of the marketing would include that fact or the fact that 1 in 4 are non responsive to ALL meds, let alone the percentage of dystonians that have been non responive to BOTOX. BTW anybody know what the statistics are on how many dystonians are non responsive to Botox ???
To me it would be doing dystonia a major injustice if mongeraled (?) by the pharm. companies. Do we really want to leave the defining and education of dystonia up to a pharm. company that is strickly for profit and who's only stake in the game of dystonia is pushing their product ... might not be a pretty picture overall.
I would say we need to count our blessings here and be thankful that dystonia hasn't ended up on one of the pharm. commercials; they make everything look so blissful and pretty and dystonia is far from either one of those. I can see them now, little butter flies fluttering about in a field of wild flowers and them telling the world how perfect life is with dystonia after botox; How many people receive total, I'm talking 100% relief from botox ... it's kinda scarey the more I think about it :)
Robin
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Permalink Reply by Robin Wood on
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Beka,
Great subject, thanks for posting it :)
If the film Twisted was put on the internet for viewing, not neccessarily on UTube but on a website where people could post a link to it, I'd be willing to bet that it would get a massive amount of views. It would enable people with dystonia to share it with their family and friends via the internet specially social network sites like myspace. Myspace has an awesome networking capability. If the film was put on UTube it would receive even more views. Everytime a dystonia awareness video is viewed yet another person learns of dystonia. Videos and films need to be put out there for pubic viewing especially in todays cyber world.
If one was to go to UTube and search the term "dystonia", you would see that the dystonia videos that are on line actually get a lot of views. There are currently 184 videos on Utube relating to dystonia. Lets take my video "Putting A Face On Dystonia". It has been on Utube for 11 months now. At the beginning of Dystonia Awareness Week in June it was at 8,600 views, that's an average of about 1,000 views a month. During the week of Dystonia Awarenss I received over 1,000 views in that week alone and just shy of 2,000 views for the month. It now sits at 11,536 views.
The "Electric Wheelchair on Dystonia" Video which is listed under the music catagory during Dystonia Awareness week was at 28,000 views, a month and a half later it now sits at 42,556 views. This gal brings a lot of awareness to dystonia, although she falls short in really explaining what dystonia entails as she has a focal dystonia in her hand caused by playing the drums and is probably non the wiser as to suffering so many of us truly face with dystonia.
My Putting A Face On Dystonia video is on websites in Japan, websites for anti depressants and who knows where else. A biggie in marketing indivual videos lies in the words You choose for "tags".
Here is a handful of tags I use: The words in bold are search terms others have used, I use them in my tags so that when dystonia is misspelled it directs them to my videos and/or myspace profile.
Dystonia Awarness, myspace, Idiopathic dystonia, dystonic, dystonian, Dopamine-responsive dystonia, Writer's cramp, Tardive dystonia, facial dystonia, Cervical dystonia, spasmodic torticollis, Spasmodic dysphonia, dystonia voice, Blepharospasm, dystonia eyes, primary, secondary, Twisted, coping with Dystonia, muscles, spasms, sustained, botox, Oromandibular dystonia, Laryngeal dystonia, Cranial dystonia, Segmental Dystonia, Hemi Dystonia, Multi Focal Dystonia, Paroxysmal Dystonia, Mycolonus Dystonia, arm spasms, hand spasms, leg spasms, shoulder spasms, Hypnogenic Dystonia, Sinemet, Prolopa, artane, cogentin, parsitan, Nitoman, Baclofen, Clonazepam, Carbamazepine, Tegretol, Benzodiazepines, Valium, Ativan, Lorazepam, Botulinum Toxin Injections, Focal Dystonia, Generalized dystonia, Head Injury Dystonia, Electric Shock dystonia, dystonic tremor, Laterocollis, Anterocollis, Retrocollis, drugs, antidepressants, neurlopletics, bipolar medications, risks, treatment, prevention, musicians dystonia, golfers dystonia, dystonie, twisted dystonia, torsion dystonia, dystonia toddler, dystonia children, dystonia adults, distonya, distonias, dystonia pen, faces of dystonia, dystonic storm,
Beka have you ever thought of doing a myspace profile for Care4Dystonia, if for nothing else, as a redirect to your exsisting web site ??? You could put your t~shirts, magnets and such on there with a link to your website where they could purchase them. Myspace would also serve as another outlet for your videos. Myspace also has it's own search engine so anytime somebody searched the term "dystonia" on myspace, Care4Dystonia would come up, another avenue to generate traffic to your site. Have you ever thought of putting the t~shirts etc on Ebay ???
Will be back later with more thoughts on this ...
Robin
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Permalink Reply by Robin Wood on
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For everybody's information:
I posted an idea for an awareness campaign like no other in the discussion about redefining dystonia medical terms. An idea that would address both issues at hand here.
Robin
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Permalink Reply by Robin Wood on
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Another thought I've had for quite some time on both raising awarenes and funding. Funding would not be so much for research but possibly to help those that are in need, to buy wheel chairs or whatever that would make someones life with dystonia a little bit easier.
The Crocked Twisted Neck Project. I must warn you, I have no idea how to implement something like this, it would certianly take a lot of time etc to get going.
It has to do with art, art shows etc. If we could get just one artist to agree to say donate 5% of the sell of a particular piece of art/painting at a gallery or art show, think of the money we could raise.
And not only that we'd also be raising awareness because in my vision I see one or two particular paintings hanging on the wall crocked or at a slant. Everybody that views the paintings will automatically caulk there heads much in the same fashion that ST effects us and they will inquire or wonder why the painting is hung in such a fashion and it would be explained to them that that particular painting is part of the "Twisted Crocked Neck Project" that raises both awareness and money for Dystonia.
Awareness would also be made on a huge level, because as people are caulking there heads to view the painting they will actually be seeing the world thru the eyes or just like those of us with ST.
The artist could also benifit in that people might be more apt to buy a painting that could provide a tax right off to them by donating to a charity.
I've got to say that this idea came to mind one day when I finally figured out why pictures always looked crocked to me. When it comes to art you are talking major dollars.
This life of luxury that dystonia has given me sometimes leaves me with way too much time on my hands :)
Robin
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Permalink Reply by beka on
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I will ask WegoHealth if there is a way of creating a webinair ???
Participants ??
beka
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Permalink Reply by Ellen S on -
Maybe tough for one, but within the scope of possibility for an entire community to accomplish don't you think, Sparky???
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Permalink Reply by Ellen S on
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This is an awesome idea. Art galleries are always looking for interesting things like this too. Any painting or piece of art can be viewed in this way. I wouldn't forget the floor and ceiling pieces for those with anterocollis and retrocollis.
Perhaps, concocting the method of doing this such as:
*Explanation- who, what, why, where, when and how, along with photos (taken from behind) of a hanging piece and viewer
*Pre-printed explanation to go next to the art (also to be hung crooked, on the floor or ceiling)
*A place to contribute donations such as an artistic folding box or illustration of baskets that could be made by artists and volunteers
*A pre-written press release that advertises not only the show, but the reason for the show/hanging
*Pre-done pamphlet supply and perhaps a couple of posters
*Volunteers to do the leg work for the gallery, or better yet, with the gallery. Also to be present during the opening of the hanging.
Maybe this is the way to get it to work, not thinking individually, but as a group. Then present the 'package' to galleries and/or artists by a dystonia patient to assist them putting together the fundraiser. If it's no trouble for the galleries to do and they get good publicity out of it, they're more likely to allow it to happen and possibly even support it.
Even a hanging in the lobby of a local concert etc would be beneficial to both. And don't forget local art guilds and societies, and even restaurants and hospitals/doctor offices which often welcome art displays. Popular Department Stores may allow a window display if it's tastefully done.
Please remember too, that we don't want to give a picture of hopelessness, pain and anguish, but one of hope and strength that goes past the experience.
Viewers will have an experience to remember when they stand with head on shoulder reading about a lifetime spent in this position. The fact this is painful is not surprising at this point, but the fact that we can still find happiness, purposefulness and an occasional smile will be. IMHO it's important to show both the black and white of the experience.
Before all this happened I was an awarded and published artist and worked with several galleries and many other artists and guilds/societies etc. (I'm still working on a comeback ) If we could work something up, I would like to present it to a couple very good friends who will be opening their show very soon. I think they would do it if asked, but we'll need to do something very soon. The location of the show will do whatever the artist wants, especially if it means more publicity, so that's already a given. (He's a great supporter)
...gotta love this forum...
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