Preparing for and Handling Publicity

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We've had a few national features and there was a great difference in the response for each. The New York Times article that was published about our illness and organization generated almost no response despite having our organization's name and url attached to the it. The article focused on the founder effect that exists in the Hispanic population in New Mexico, and I'm guessing not too many New Mexicans are NYT subscribers.

Our Mystery Diagnosis segment on the Discovery Health channel however, generates a healthy amount of email and calls each time it runs (perhaps 20-30), but so far this has not been overwhelming for me. Our article in the American Stroke Association's patient magazine did the same. I am thinking that another difference between these two outlets and the NYT is that they have audiences that are already health-oriented. If you are approached by this type of media, be prepared to have half the emails and phone calls come from people who do not have the illness, but who have symptoms that are close. I would suggest a standardized response for this type of inquiry as well.

Connie Lee Angioma Alliance


When we've been on TV a few small but important things that I learned from one of the Genetic Alliance lunchtime sessions a few years back has been tremendoulsy helpful:

As part of your participation agreement, make sure that the station agrees to put an online link to your website and/or a Chordoma Fact Sheet page on theirs. In it you should have some facts, the phone and email contact info, and advise regarding how they can get more information by mail as well. (We provide a mailing address as there are many who do not have long distance service and prefer to write in for the info.) That ensures that, if you generate a lot of interest, everyone will be able to reach you afterwards. (If you don't get a commitment on this in advance, it may not happen later if your story airs on a busy news day.) When these shows air we've had so many calls that the phone lines overloaded but, because of all the contact options, everyone eventually gets through.

Also, prepare a standard response information letter so that you can move quickly through the requests for information and get back to serving them. You may need to add a few personalized lines or respond to a unique question but for the most part, a standard response "mail merge" letter works well for us for those initial inquiries.

Hope this helps.

Good Luck, Sandy Gordon Trimethylaminuria Foundation


When invited to a national television talk show, many who tune in will then check out your website. One suggestion is to make sure you let your website host know about this because the increased traffic (and it will MORE than double) could crash your system. And optimize the donation “ask” to draw in people who will be momentarily touched. You can also find a quick matching donor and set up a “need to raise X by X date” situation. A good way to publicize the appearance is through Twitter. Tweet and ask others to retweet it.


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