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From Where I Sit


Catgirl. Turtle Boy. Werewolf. Hairy. Enormous. Disfigured. Abandoned. Rejected.

Sensationalism, involving use of fear, anger, excitement and crude thrill in online media, brings its purveyors more readers and page views, and therefore higher advertising revenues. Fight ignorance with your helpful knowledge. Turn the unhealthy "buzz" which has rightly upset you, into a communication tool. You may bring good into the life of the person whose image has been exploited, or into the life of others like her closer to home, who had never met another person with an unusual congenital melanocytic nevus.

First is, link to it, if you want to spread the word, using this tool, by adding http://www.donotlink.com/ in front of the original address. This will allow you to read what is objectionable in the report, and prepare your response, without enriching the purveyor. Often this is simply a shoddy reflector of a pre-packaged sensationalist story sold to them by a photojournalistic outlet.

http://www.donotlink.com/www.example.com/shady/stuff.html

Second, often one has to sign up to leave comments. Try to do so, if possible for you, with an e-mail address set up only for marketing purposes. Mine is "poubella.junk@gmail.com" and I use a series of more or less real names as well. Then, I only skim the e-mail going to that account, in particular for the activation links to access websites.

Third, there are a few useful elements to include. In addition to whatever else you are inspired to write, at least include these. If you spell out the condition, it will help search engines find your comment. "This is probably a congenital melanocytic nevus / naevus. The exceptional ones like this are very rare, but rare diseases collectively affect one in twenty of us all. Be compassionate. To help this person and others like her, and for more information, please visit (your local association website) and http://naevusglobal.org."

Fourth, stay polite and if possible, removed from flame wars. You know vastly more than anyone else bothering to comment there, except perhaps those people you've rallied to respond with you. Thank you for doing a great service to others by taking this initiative and setting an example.

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Thanks, Heather. --Mark

Heather Etchevers and Mark Beckwith

Heather and Mark worked together to make the International Meeting on Congenital Melanocytic Nevi and Neurocutaneous Melanocytosis a reality last fall in Marseille.

Up For Air?

Goodness, my recovery seems to be taking longer than I had thought it would.  I said I would be back in the saddle on July 15 and here it is July 24 and I'm significantly not ready. Today I had my stress test and I have no idea if I passed or failed and if I did, whether that is good or bad.  I mean, if you fail at having stress, isn't that good?  Or does Read more...

Luge Ride to the Weekend

I'm writing the morning of the start of the 9th Nevus Outeach Conference.  In ways, it's very much like past conference times, in other ways it's not.  Some of my inspiration is missing, but I can only blame myself for that.  Also I have been Read more...

They Said it Wouldn't Happen

Still floundering here. Undoubtedly this will be a permanent state until after the conference and the radiosport thing are over.

I managed to get nearly all of the daily recap blogs done for the Freewheel, so I will distribute them bit by bit through next Saturday. There is some really fun stuff in there, and I hope you enjoy it. I hope it's not too much. Read more...

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Authors

     Heather Etchevers
     Mark Beckwith

Executive Director
Nevus Outreach

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