ALS Association, Don’t Waste this Opportunity

I have a different perspective on charitable organizations than most. My first job at 13 years old was cold calling for charities. I would sit in a smoke-filled room dialing lists (phone book, past donors) for hours. I hadn’t hit puberty yet so most prospects would call me ma'am. I got more donations when they thought I was a female, so I ran with it. The owner of my company drove a new Ferrari. His 19-year-old son, who ran my office, also drove a Ferrari (one of his dad's old ones). They would ask the police or a charity in the town if they could raise money for them (say $10,000) and if they raised $40,000, they kept the difference. I started to see how easy it was to use people's good nature to raise money for purely selfish reasons and I developed a healthy distrust of charitable organizations.

My mother was a college professor. I would listen to her colleagues talk about how they had a "research grant" and then they used this time off from teaching to take another job, write a book, etc. instead of conducting said “research.” So I also developed a cynical view of the ability to waste money on "research."

The Amyotrophic Lateral Sclerosis (ALS) Association now finds itself at a crossroads, with unprecedented donations and the influx of funds to make real headway with a fatal disease that is still largely a mystery.

ALS is more commonly known as Lou Gehrig's Disease. It is a horrible disease that slowly kills the body’s ability to use muscles. First the conscious muscle use goes (walking, lifting), then the sub-conscious (breathing, swallowing) and, finally, the eyes tend to go last. Imagine, your mind is fully sharp, but your body no longer listens or responds. It is like living in reverse of what you did as a baby. Nobody should have to endure this disease if we can solve it.

Lou Gehrig announced his diagnosis July 4, 1939. In the 75 years since, little attention has been paid to the disease, and little progress has been made. Sadly, even the root cause is not really known.

A very good friend of mine has been stricken by this terrible disease. I am blown away by how, in just this year of his diagnosis, it’s a cause that has for the first time come to the forefront of society's attention with the Ice Bucket Challenge. It feels like fate.

The amount of money raised by this challenge has been staggering. At the time I am writing this, the total raised for the ALS Association has been about 80 million, vs. 2.5 million at the same time last year. That is a 32 fold increase. This is amazing.

The ALS Association appears to be reasonably well run based on the percentage of money received that actually goes into programs. In 2013, 72.3% of the funds raised went to the programs they support. This has nothing to do with how effective they are at running their programs or the quality of the research, but it is a start.

When I did my Ice Bucket Challenge, I challenged the association and researchers to use these funds wisely. The association has NEVER seen money like this. The research teams and association cannot be equippedto deploy it all right away, and in some ways, that is good. This windfall cannot be counted on every year, so it needs to be spent effectively.

We need to use this opportunity to start making progress on fighting this disease. There should be no big increases in salaries or overhead for the association. The association needs to make sure the researchers being funded are making progress or, if not, stop wasting money on the bad research paths and move it towards more promising paths.

Really, any disease has only a certain number of possible root causes – genetic, environmental, viral, bacterial, nutritional, or physical damage (or some combination).

This disease needs passionate researchers to attack the search for answers head on – perhaps people who have lost someone to ALS or people who may have a family risk.  We need researchers who are dedicated to finding a cure today, not tomorrow. It's a very worthy cause, but I don't want to see the fight to cure ALS become people's life-long careers. We do not need more experts at "knowing the most about nothing." Let's work on it, solve it, and move on to fight other diseases. Or, at the very least, let's use this money to find root cause(s) so we can attack something specific.

This is an opportunity to change lives for the better. Let's make the most of it!

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