Why I do what I do

A few days ago Stacey posted a link to a blog with the following comment, "I have NOTHING to complain about and EVERYTHING to be thankful for." Curious as always, I clicked the link she provided. It is a blog written by a man who was diagnosed with ALS (amyotrophic lateral sclerosis; Lou Gehrig’s disease) a disease I have been studying since 1995. As a scientist, disorders like ALS are a great puzzle, fun even. What causes the disorder? By what mechanisms does the disease progress? Where, when and how might we intervene to stop the disease process? It is easy as a scientist to step back from the human element and focus only on the fun of solving these scientific mysteries. It is risky to do this because it takes away the urgency of the problem.

The anonymous writer of the BrainHell was diagnosed with ALS 1223 days ago, meaning he has already survived longer than many who receive such a diagnosis. He is a young father of two children who was diagnosed at age 41, an age not much older than my own. The process of research can be frustratingly slow. While there are exciting advances all of the time, none of them are likely to help this man or others like him who are sick today. I hate this. Like many who become researchers, I went into this field of work to make a difference, to prevent suffering, to cure disease. Time marched on and those goals became smaller, more realistic, to simply add a piece to the scientific puzzle so that others may one day build on it to develop cures and prevent suffering.

I am teaching a class later this week for a group of cognitive neuroscience students. I was asked to speak on ALS even though very few people with this disorder develop cognitive dysfunction. Normally on slide #1 I introduce ALS as "a fatal neurodegenerative disease leading to paralysis and death within 2 to 5 years of diagnosis" and move into what is known. So dry. So easy to walk away from. This time, as an introduction, I am going to have them read a post written by BrainHell’s friend about his 24 hour visit. I will also have them watch Lou Gehrig give his incredible speech about being the luckiest man in the world (definitely worth the 3 minutes of your time if you have not seen it). I hope that by presenting the human side, the topic will be more cogent to this group of young healthy students.

If ALS interests you, there are many ways you can help.

• Donate your time
  • Care givers need days off more than just about anyone
  • Support groups always need volunteers – both the MDA and the ALS Association sponsor support groups; there are also many local independent support groups
• Donate your money
  • To support groups – many provide equipment and family resources
  • To research endeavors – find a local scientist in your community or support one of the national organizations like MDA, ALS Association, ALS Therapy Development Institute, Project ALS or the Packard Center for ALS research
  • As with all charitable giving, do investigate how your money will be spent. You almost always can restrict your gifts so that the funds are spent in ways that are most meaningful to you.
• Participate in a fund raising event for ALS like a walk or triathlon.