Ride For Life

ALS patient lives in the moment, builds legacy for his family and others
BY RHODA FUKUSHIMA
Pioneer Press

In August 2004, Scott Stafne and his wife, Kirsten, learned they were expecting their first child. Three weeks later, Scott was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. He was 32. Their daughter Eva was born in April 2005. Since then, the Stafnes, of Minneapolis, have established the Scott Stafne ALS Research Fund, with a fund-raising goal of $100,000. None of the proceeds from their benefit events will go to their personal expenses. Scott keeps a blog (www.stafnes.com) and has started other projects for Eva and Kirsten.

"Shortly after I was diagnosed, I immediately thought of my wife and the child who I hadn't even met yet. What's going to happen to them? What am I going to do to be there for my daughter, to be there as a husband?

"The (legacy) project is a combination of things. I've compiled a list of things to cover. I sit down and record video. Some of it is my history — who I was, fond memories of childhood, why I chose this career over that. It's my own life lessons learned of love, marriage, philosophy, religion, music, art.

"It's extremely difficult. I go through ups and downs. I put a lot of pressure on myself that it needs to be perfect. It's a struggle between getting it right that way and getting down the 'raw' me.

"I also record my voice. I once took a class from a woman who does audio engineering. I contacted her and asked, 'Would you be interested in helping me?' I'm going to … record a bunch of stuff. It can be used with software, so if I can't speak, I can use my hands or eye-gaze things to speak. If I want to say 'Good morning' or 'I love you,' there's at least some of my voice that is part of the interaction.

"I've not set a lot of specific goals because of the uncertainty of things. That's my goal every day: live in the moment. The ideal space for me to be in would be to accept what I have but keep the hope alive.

"(The money we raise) goes to research or nonprofit organizations. In the short term, we found there is pretty good local support for equipment and things like that.

"The average cost for a person in the late stages of ALS is more than $200,000 a year. We figured trying to save or even raise money to have in our own coffers won't cover it all anyway. We're gambling a bit.

"Also, because I'm younger and not as far down the line of progression, it's easier for us to focus on research — keeping hope alive for me or whoever else is alive.

"We're not independently wealthy, but we have health insurance. I would never claim it's this big altruistic thing. It might not benefit me in finding a cure, but I feel very strongly we want to pass things along to the next generation."