Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Tuesday, March 13, 2012

Each Year's Picture Is Worth 6000 Lives

Every May at the big ALS Association Advocacy Conference in Washington, DC, there is a large candlelight vigil for those attending. Recently a relentless, healthy ALS advocate posted a picture of a past candlelight vigil on her facebook page with the comment, "Really missed our old gang here."

The faces change. Every year. Many people with ALS get only one chance to go to Washington to get a few things off their chests with their legislators. They die far too quickly. This year's picture won't have the same faces as last year's. Every year the patient faces change.

Every year the healthy who attend in support of those who can't be there miss their old gang. Every year I hate to ask about somebody who isn't there. Every year I meet people knowing that the odds are that I'll learn more about them in obituaries that I'll read far too soon.

That's the problem with ALS. You can take a picture every year and the public will have the impression that it's like a family photo album where the family grows older and the hair styles change in the 10 years of Kodak moments. That's not the case with ALS. You would be shocked if we marked all of the faces we have lost in past photos.

Perhaps we should have a special candle display for all of those who have held candles at past vigils who have since died. It would be a huge display. It would grow every year. The increasing blaze would tell the story better in future snapshots. The increasing blaze would remind us that we must put out this fire.


  1. This is a horrible disease. My mom was diagnoised in Dec 2010 but we believe she has it for 5 years already. I pray everyday for a cure and fast.
    Its hard to see people from the ALS group she goes to it breaks my heart. MY mom cries and so do I. Recently the group lost a fellow friend to this disease.
    I just wanted to let this out. I cry alot inside and never let it show on theoutside.
    I don't know how much time I have with my mom but I will make the best of it. She gave me everything now its my turn to give to her.

  2. Anon 5:06 I wish I had the words that would make it all better, but I don't. We all pray for that breakthrough that will help your Mom. You're welcome to let it out here whenever you feel like it. You and your Mom can be assured of our continuing prayers.