Wednesday, March 10, 2010

We Need To See The Rest Of The Stories

MDA has a series of patients vignettes in May titled, "Anyone's Life Story." ALSA has a flatteringly similar series titled, "ALS Across America." Each profiles many brave people with ALS throughout the month of May (ALS Awareness Month in the U.S.).

Showing a new set of patients every May doesn't tell the ALS story well enough. We need a "where are they now" follow-up of past honorees to help the world understand ALS. Some have died. Many are still hanging in there, but ALS is a different, more difficult beast to deal with as time goes on. A glimpse of the physical changes that honorees endure in a year would be startling to a public that is very naive about ALS. It would also continue to honor the past honorees.
There are handsome family pictures when PALS are honored. It wouldn't be pretty, but it would be very enlightening to show family pictures in a year or two or three.
Will an organization seize this opportunity distinguish this disease and tell the rest of the stories?

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