The Ticking Clock Can Cause A Dilbertian Perspective on ALS Research

People with ALS live with a terrible ticking clock. They play out their lives like an ultimate game of speed chess.

It can change one's perspective on efficient use of time and the best processes for discovering and approving treatments. We all have to acknowledge that what we have been doing for the last century has failed to develop a cure (or even an effective treatment) for Lou Gehrig's Disease.

I'll bet more than a few people with ALS rolled their eyes when they read Dilbert this morning.

ALS Awareness Isn't Working

Would someone call a company Heart Attack Enterprises?
Would someone call a company Gastric Reflux Enterprises?
Would someone call a company Urticaria Enterprises?

http://www.startribune.com/sports/outdoors/94639959.html?elr=KArksLckD8EQDUoaEyqyP4O:DW3ckUiD3aPc:_Yyc:aUUsZ

It's Not 6000 Lost Americans... It's 6000 Lost Americans Every Year

Around 6000 Americans die annually from ALS. Every Advocacy Day we remember them... or do we really? We are good at remembering the here-and-now -- the 30,000ish people living with ALS and those 6,000ish who died during the past year. We're terrible about getting our here-and-now brains around the cumulative effect of this disease.

One idea that has been bounced around for years has been to have 6000 empty chairs present at the ALSA candlelight vigil in Washington to remember those who have died in the last year. The following year there would be 12,000 chairs and the year after that, 18,000. At some point the chair display would get so big that the people who live and work in Washington would have to pay attention. If we had started doing this when I first went to advocacy day seven years ago, we would be up to 42,000 chairs. 42,000 people who were somebody's mother or father, somebody's brother or sister. 42,000 empty chairs clogging up our nation's capital. 42,000 lost lives. Can you imagine our national resolve if that many lives were lost to terrorism or airplane accidents or tainted spinach?

If not the empty chairs, perhaps a balloon release. That would get some attention, too. Lou Gehrig died in 1941. 69 years * 6000 Americans ... almost half a million balloons.

It's not just an American problem. If we started finding ways to represent the global loss of life to ALS since Lou Gehrig died, we would be renting over 8,000,000 chairs or releasing enough balloons that the FAA would probably stop us.

Let's Have Altruism Day For ALS Awareness Once Every Year

Dear ALS 501c3 Organizations,

Lest you dismiss me as an idealist who doesn't know what it's like to have to raise funds and make payroll, please don't. I'm not.

Earlier this week I witnessed a refreshing and grand act of altruism from an ALS 501c3. I suggest that all such organizations join in a day of altruism once a year simply to raise awareness of ALS.

Main Entry: al·tru·ism
Pronunciation: \ˈal-trü-ˌi-zəm\
Etymology:
French altruisme, from autrui other people, from Old French, oblique case
form of autre other, from Latin alter
Date: 1853
1 : unselfish regard for or devotion to the welfare of others
2 : behavior by an animal that is not beneficial to or may be harmful to itself but that benefits others of its species

A caravan of ALS Association Florida Chapter staff and volunteers (including a man with ALS who accomplished more in a week than many of us healthy people will do in a lifetime) packed up the trailer and gassed up the vans and drove to Washington, DC. They had spent countless hours working out the advance details with the National Park Service, with the Navy Memorial, and with the press to make a first-class ALS advocacy display in our nation's capital. The logistics of this display are not simple. An extra carload of volunteers drove to DC simply to assist with the setup and teardown. Had I known how technically precise and how physically demanding the setup is, I would have suggested press coverage of that alone.

What does this have to do with altruism, you ask? When was the last time you attended a public ALS event when fundraising or organizational positioning weren't key components?

The Floridians had nothing to gain by this expensive field trip... except a huge amount of ALS awareness. Only a small fraction of the many hundreds of people who stopped and looked and learned about ALS were from Florida. There were people from Wyoming and Michigan and Alaska and Australia and Canada and Russia and DC and Germany and France and Illinois and Japan, but it's not likely that they'll run home and write big checks to the ALS Association Florida Chapter, nor will they be asked for anything. They were simply thanked for stopping to see the display and learn about ALS. Oh, and nobody forgets Lou Gehrig's Disease after having witnessed that display.

This ALS 501c3 invested in global ALS awareness. They never asked "what's in it for me" when they decided to chase this ambitious goal. The focus was on ALS and not "me."

I thank them. I ask all ALS not-for-profits to have a project every May that is for the sheer benefit of raising ALS awareness. Save the lists of organizational accomplishments. Let your development person work on other things. A day of altruism is good for your organizational soul.

To quote a great man who happens to have ALS and who makes this display work,
"Without awareness we won't have funding. Without funding we won't have research. Without research, we won't have a cure."

$16 Bil vs $16 Mil - What A Difference A Letter Can Make

The morning paper indicates that it may have been a typo that made the market plunge yesterday afternoon. Somebody typed $16 Billion rather than $16 Million. Pow. Things happened.

Next week ALS advocates are asking Congress for $15 Million for ALS research in the DOD ALS Research Program. Perhaps we should ask for $15 Billion so that we might get a plunge in ALS. Pow. I'm not kidding.

We Have A Message For Washington And The World

We Don't Have A Long, Long Time

I got to hear some AIDS activists from the past speak last Wednesday evening. They didn't dwell on their considerable accomplishments because there is still much to be done. They did give me a valuable glimpse into how they accomplished so much twenty years ago.

One spoke of being firm and doing what is right, rallying around a loved one and standing up for his rights.

Another spoke of needing to get our government off its governmental "butt" (his word, and a poignant one at that). Twenty years ago our government had been saying it was doing much, but it was lip service. It wasn't coming close to a meaningful commitment.

These were just-do-it people. They were articulate and clear twenty years ago and they still are today. They work using the energy of a controlled rage and a positive mission. They are not sheep. They know how to go off script.

I left that evening with a new fire for getting some things done for ALS. Our governmental butt is bigger than ever and we need to get some meaningful action for ALS.

Jeanne White Ginder and Sir Elton John had much to brag about yet they spoke only of the gift of Ryan White and the work that still needs to be done.

I learned one thing for sure -- the ALS cause needs more articulate and visible leaders on a common mission for meaningful results. Toss the scripts. Toss the celebrities lacking the rage. Toss the roadmaps. Think big. Think meaningful. Just do it.

p.s. For those who think that awareness is not critical to advocacy, here are the words of Elton John in Sunday's Washington Post: "Most important, Ryan, you inspired awareness, which helped lead to lifesaving treatments."