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Tuesday, May 14, 2013

Lobbying

Amanda and I spent 24hrs in Washington DC this weekend, arriving at 4pm on Friday afternoon.

I've been to DC before, but this was the first time I went with Amanda.

The sole reason we went was to spend some time meeting with Michael and Libby Jaillet.
People who work for charities involved in the fight against ALS will often ask Amanda and I if we have attended any of the various support groups available to us. So far, the answer has always been, "No."

The most simple explanation is that the support groups invariably meet at a time that is impossible for us to make.

If I delve a little deeper, I'd probably confess that I already have a support group...on twitter. Doctors, caregivers, families that have lost a loved one to ALS, fundraisers, pharmaceutical companies, and ALS patients ...the full spectrum of the ALS community.

I'll talk about my twitter support group at a later date, but for the context of this post, twitter is how we met the Jaillets. I know that Amanda and Libby have become particularly close. Twitter messages grew to regular text messages, and text messages quickly became emails.

To piggyback on the Jaillets being in DC for an ALS conference, Amanda and I decided it was a great reason to visit the capital and Michael and Libby.

Needless to say, it was one of those trips where you wonder, "why didn't we do this before?" It was the first time I ever spoke with another PALS about ALS at length.

 Amanda and I visited the Lincoln Memorial the following morning. We walked back to our hotel from there, enjoying stops along the reflecting pool, before spending a decent chunk of time taking in the WWII Memorial. 

We decided to take a more direct route back to our hotel from there. As fate would have it, the route took us past the White House. We loaded up the car and left town, as quickly as anyone can leave DC.

After we made it to I-66,I was able to relax and reflect on the trip. There were countless memorable moments with the Jaillets, and I think I will keep those moments in my personal memory vault. But I would like to share a thought I had while at the Lincoln Memorial.

 On Lincoln's right hand side, his words from the Gettysburg Address are inscribed on the wall of the memorial. Forgive me for not giving a mini history lesson on the speech, but there are many resources available on the battle of Gettysburg, and the context of Lincoln's speech. The following except struck a nerve with me :

The world will little note, nor long remember what we say here, but it can never forget what they did here. It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us—that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion—that we here highly resolve that these dead shall not have died in vain.
 Old Abe had a way with words.

1 comment:

  1. I'm glad to read you had a nice trip and made connections with others who really understand. That's important to us with ALS and our spouses.

    I also agree with you about Lincoln.

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