This is my friend Steve. Steve and I first met over 20 years ago at the new member class at our current church. We’re about the same age, and have families in the same age range (my oldest is older than his, his youngest is older than mine). Steve and I are both technical guys, and we had pretty good jobs back then. Steve took his family on a 3 year adventure when he accepted an ex-pat assignment to Munich, Germany. I had the good fortune to have business in Munich while they were there; I took the S-Bahn out to their place (in Grünwald) and WOW! did they have a nice setup.
It’s been rough for Steve after that gig. He was out of work for a while, but has landed a great job with a very supportive company. I say that because none of those things compare to the most recent happening.
About 5 years ago, we found out that Steve has ALS – Lou Gehrig’s disease for those less up to speed on their medical jargon. ALS is a degenerative nerve disease – nerve degeneration leads to muscle weakness, gradually robbing your ability to walk, speak, write, and ultimately to eat, breathe, or have a heartbeat. But ALS is more evil than simply doing that: while this is happening, you are completely aware of it all – sufferers usually keep their mind intact. While some symptoms are treatable, there is currently NO CURE.
ALS also robs patients and their families of their money. Insurance companies don’t like ALS patients because they’re expensive and unlikely to survive. Funding sources like drug companies don’t like ALS patients because (thankfully) there aren’t really that many of them, at least not enough to justify spending 10s or 100s of millions of dollars on the research – “only” about 35,000 at any one time in the US. Government funding is lacking because there isn’t enough votes to force it. That leaves local organizations as one of the only sources of funding, turning them into a lifeline for patients and their families going through this difficult experience.
Steve is an active member in the local ALS support organization, the Les Turner ALS Foundation. I’ve joined his team this year to help raise funds for the Foundation in their annual ALS Walk4Life; Steve gave the kickoff speech at last year’s walk (transcript). Please consider a donation in support of Steve - an easy way is to sponsor my walk. A donation of $250 can provide transportation for an ALS patient to and from a clinic visit, while $50 provides for 2 hours of respite care. If your employer provides a matching contribution program, please donate at least the minimum that their program requires – while I don’t get credit for that part of the money, Steve and other ALS patients do, which is the goal after all. Your gift helps people like Steve with an improved quality of life, and funds the necessary research to one day provide a cure.