As the last Foundation board meeting was wrapping up, I pointed out to the board members that Chiari and MS are similar in many ways.  They affect about the same number of people, they hit many people in their early adulthood, a lot of the symptoms are the same, and the progression and severity of each varies widely.  One way they are not similar, however, is in recognition and awareness. 

Most people have a general awareness, and some level of understanding, of what MS is.  Why is this?  Montel Williams - the talk show host - frequently promotes awareness on TV.  Neil Cavuto - who hosts his own show on Fox News - while not a strong advocate, does openly discuss having MS.  The winner of the last Survivor talked about using some her winnings to help fight MS.  Finally, MS was written into the West Wing near the height of it's popularity.   

In contrast of course, virtually no one has heard of Chiari.  If Chiari is mentioned on TV or in the print media, it is on cable shows on Discovery Health or in small town newspapers.  There are no celebrities - that I am aware of - who have Chiari; or if they do have it, they don't talk about it.

Therein lies the problem.  Right or wrong, in today's world, every disease needs a celebrity spokesperson.  A famous, familiar face to create awareness and to get Congress' attention.  Look at what Michael J. Fox has done for Parkinson's.  Look at what Christopher Reeve has done for Spinal Cord Injuries.  The reality is that one of the most effective ways to reach people is through television and national publications, and the easiest way to get their attention is through a celebrity.

So why doesn't Chiari have a celebrity spokesperson?  Are there famous people whose lives have been touched by Chiari?  One would think so.  If Chiari affects 1 in 1,000 people, the odds suggest someone would have been affected in the last 10 years.  Some actor, athlete, or musician.  Someone's son or daughter or mother or brother.  So why has no one come forward?   Is it just that the odds are against us and no one famous has been affected?  Or is it that no one has felt the need to do what Montel, and Michael J. Fox, and Christopher Reeve have done.  I don't know the answer.

Chiari needs a spokesperson.  Not only to make patient's lives easier - imagine if people actually had heard of Chiari - but to get the proper research focus that we deserve and need.  I don't know when it'll happen, but eventually, we will have a spokesperson who can spread awareness quickly. 

However, until that time comes, we have to spread awareness the old fashioned way, one person at a time.

I was in the restroom of a restaurant a couple of weeks ago, when the guy next to me asked about my scar.  I was tired and wanted to get back to my family and food, but I gave him a quick answer - it's from surgery.  He looked at me inquisitively, so I decided to dive in.  In about 20 seconds I had explained the basics and finished with the name, "It's called a Chiari malformation."  He asked me to repeat it and I did.

As I went back upstairs to my table, it occurred to me that while we can benefit greatly from a celebrity spokesperson, the truth is we are all spokespeople.  If we take the time to explain  - in simple terms, without anger or complaints - the basics of the disease to nurses, doctors, dentists, teachers, neighbors, and strangers, awareness will spread and we will make life easier for the next person diagnosed.

--Rick Labuda