Monday, May 12, 2008

What next?

We can only hope that all our emails are still wending their way through the desks of the celebrities. One day we may here that one or more of them picked up the ball and will do a segment on ALS. Certainly we generated a collection of stories that will live on telling of living and dying from an "orphan" disease.

May is ALS Awareness Month but so far the only ones who seem to be aware is the ALS community. I have seen nothing in the print or broadcast media, just emails from MDA and ALSA to me.

Ken Patterson should have completed his tour yesterday. Ken's Rolling Over ALS Tour was a courageous action to put some meaning and muscle into awareness. If you are reading his journal on the tour, at least there seems to be one gaggle of folks out there that know of a lone man in a power chair followed by a van and trailer plastered with ALS awareness ribbons. This gaggle slowed down long enough to give this courageous soul that ubiquitous single fingered salute. I say "right on" Ken and Glenda, you both deserve medals.

Maybe we will see a new path or a new campaign growing out Advocacy Days in Washington DC this week. Just getting some news on the ALS Registry Bill will be a bright light of discovery shining through the darkness of any news since December. There were rumblings that some of our fellow PALS are planning a visit to the offices of Senator Tom Coburn, the single roadblock to the ALS Registry Bill to see if putting a face on the disease and the rage and frustration will somehow break through his erstwhile roadblock mentality, and maybe the presence of 500 or more PALS on Capitol Hill will stimulate the other 99 Senators that Coburn is thumbing his nose to show some guts and bring the legislation to the floor for an up or down vote.

Let's see what we hear and what we see come out of Advocacy Day.

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