We Remember

This morning Sleepy read that approximately 10.1 percent of Americans are veterans.

Here goes some arithmetic on the back of an envelope...

We lose around 6600 Americans to ALS every year. Military veterans have around twice the incidence of ALS than the general population.

So, 10.1% * 6600 * 2 = 1333 annual veterans' deaths from ALS.

So, since Lou Gehrig died in 1941, we have had around 80,000 veterans who have died from ALS.

That would be even more names than are on that agonizingly long Vietnam Memorial wall. Enough is enough. Those who put up their lives to defend our freedoms deserve better.

One Should Not Whine About One's Job

...on one's employer's facebook wall.

I found this facebook posting interesting. It was on the ALSA wall where they have finally made a comment regarding some offensive radio comments on a man with motor neuron disease.

ALS Association Sybil, 1st I saw it was Wednesday morning when I came back to work. I am one person trying to keep this page going, on top of all my other job responsibilities, and I have to take care of my young children after work hours. The ALS Association consists of real people with full time jobs and families, many of us caregivers after work for children and aging parents living with a variety of disease. I'm sorry if I wasn't on this quickly enough for you. Believe me, I understand the urgency. My grandfather died of ALS, so I am not just a clock puncher without compassion here. I work for the ALS Association because I WANT to. And like every one of you, we are all doing the best we can with the resources we have.

It's not about real people with compassion who WANT jobs. It's about results.

For many years we have seen ALSA fail to be a part of the online conversation and we have seen countless media opportunities muffed for lack of timely response.


If this happened to be a volunteer representing the ALS Association, then please forgive me for the misunderstanding. Whether an employee or a volunteer making the statement, it's past time to engage a communications professional who understands and can handle the 24/7, spontaneous nature of so many of today's media. Those smart phones don't shut down at 5 p.m., do they?

Let's Learn What Restaurants Finally Learned

This morning our local paper carried an enjoyable column where a restaurant manager listed his favorite places to eat in our city. What a great insight into the really good dish at the hole-in-the-wall strip mall spot. How nice to know about the old staple local restaurant that still has good comfort food. It's even refreshing to see that a hotel dining room has service that a peer professional admires.

Restaurants have learned that the more people eat out, the more people eat out. Each has to sell its unique place in a diner's options without belittling the place of its peers. Each restaurant's hat tip to another restaurant makes the public want to try both places. Today restaurants aren't focused as much on a growing market share as much as they are on a growing market.

It's a tough business. It's as tough or tougher than trying to keep a 501(c)3 afloat.

Are our ALS organizations being myopic on having a share of a fixed (or shrinking) market of existing donors? Do they view each other as hard-nosed, cutthroat competition rather than peers who bring different things to the fight against ALS? Have they missed the boat on making the market grow?

When a disease is as vexing as ALS has been, donors may actually want to support several organizations. Some people like a Big Mac while others like sushi while others like Michelin stars... and some people actually like them all.

When a disease is such a well kept secret as ALS has been, perhaps it's time to start getting smarter about how to look beyond donor market share and deal with growing the market.

Restaurant week, anyone?

We Need A Time-Lapse Image Of ALS

Again this year the MDA and the ALS Association are featuring vignettes of people with Lou Gehrig's Disease to observe ALS Awareness Month in the U.S. They are snapshots of courageous people and are somehow timeless.

Don't you love the time-lapse images from big events? The royal wedding's was amazing. Every year the Indy 500 gives us a magnificent view of a long day of activities. Football games on time lapse are great fun.

Perhaps next year instead of the still-snapshot vignettes of those with ALS we could have a time-lapse image of the disease that takes a person from being the picture of health to a wheelchair and then to a bed and coffin far too fast. That would make an impression. That would really tell the story.