ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, June 29, 2011

With ALS, Patients Have To Take The Healthcare Bull By The Horns

Interesting perspectives from an empowered cancer patient...

"Let Patients Help!"








Thursday, June 16, 2011

It's Good To Remember Lou on His Birthday

And it will be great if we can rid the earth of this beast of a disease before his next birthday!

Wednesday, June 15, 2011

Eight Years... 50,000 American Funerals Later


Remember June 19, 2003? It was Lou Gehrig's 100th birthday. We passed out baseball cards and gathered donations for nice commemorative pins. We started to realize that there are a lot of young baseball fans who don't realize who Lou was. We raised awareness the way we always raised awareness -- with modest and diligent and sporadic efforts at small events.

We have lost around 16 Americans to Lou Gehrig's Diseae every day (seven days a week) in the last eight years. We still try to raise awareness in very modest ways, the way we always have.

ALS is a big problem. It's time for some big, effective, continuous efforts to bring the ALS problem into serious focus. If most people don't know ALS is still around, we certainly can't blame them for ignoring it.

Shame on us if we keep raising awareness the way we always raised awareness.

Tuesday, June 7, 2011

Advocacy Action Requested

Following is from an email received from ALSA:


Earlier this year, we requested that you contact your Members of Congress to urge them not to eliminate the ALS Research Program at the Department of Defense. Thanks to your outreach, Congress provided $8 million for the program this year! You made a difference. But we need your help again.

The House Appropriations Committee is scheduled to vote on the FY 2012 Department of Defense Appropriations Act on Tuesday, June 14 and we have learned that an amendment may be offered that would eliminate the ALSRP next year. We cannot let this amendment pass. If it passes, at least $8 million that is so urgently needed for research no longer would be available. It would mean that research specifically designed to find a treatment would not take place.

Please contact your Representative TODAY! Tell them to save the ALSRP and work with the Appropriations Committee to make sure our government continues to support the fight to find a treatment and cure as soon as possible!

You can email your Representative directly from our website, here. Do it today. And tell your friends, family and everyone else you know to do the same. Your outreach made a difference earlier this year and we are confident that it can again -- but only if you take action today.

Thank you!

Friday, June 3, 2011

Let's Stop Shooting Our Cause In The Foot

Years ago a really smart person came up with the tagline, "Every 90 minutes someone is diagnosed with ALS. Every 90 minutes someone else dies from ALS." That's a great, concrete, attention-grabber. Unfortunately it doesn't tell the whole story.

That "90 minutes" is based on U.S. statistics only. Around 6000 people in the U.S. are diagnosed with ALS every year and a like number die from ALS. That's around 16 U.S. diagnoses and deaths per day, or one every 90 minutes. Great. But it's U.S. only!

ALS is a global problem.

The United States has around 4.5% of the world's population according to the U.S. Census Bureau.

So... assuming that the incidence of ALS is similar globally, let's try some arithmetic...



6000 / .045 = 133,333 new cases and funerals annually worldwide. Whoa.

133,333 / 365 = 365 new cases and funerals daily worldwide. Wow.

365 / 24 = 15 new cases and funerals per hour worldwide. Holy moley.

60 / 15 means that every 4 minutes someone is diagnosed with ALS. Every 4 minutes someone else dies from ALS. Yikes.

So let's get it right. Either "Every 90 minutes someone in the U.S. is diagnosed with ALS. Every 90 minutes someone else in the U.S. dies from ALS," or "Every 4 minutes someone is diagnosed with ALS. Every 4 minutes someone else dies from ALS."

Tick, tick, tick.




Or maybe, "There are well over 100 thousand new cases of ALS annually. There are well over 100 thousand others who died from ALS last year."

p.s. If my arithmetic is off, I'm all ears.





p.p.s. Check out the first paragraph http://lillypad.lilly.com/corporate-responsibility/fighting-hunger-bold-goals-moral-obligation They made a problem come to life!




p.p.p.s. 1pm EDT Fixed the arith. Got carried away with zeroes. Sorry about that. Phew!

We Need More Of This Attitude!

Thursday, June 2, 2011

It Doesn't Take Long

Two years ago this coming July 4 we celebrated the 70th anniversary of Lou Gehrig's farewell speech.

Today is the 70th anniversary of Lou's death.

It didn't take long for a man to go from baseball mega-superstar to the grave. This disease persists. The outcome today is much the same that Lou Gehrig experienced.

Perhaps our tagline should be, "ALS -- I'll bet you thought someone had cured it by now."

In the time since 1941 think of the advances in science and medicine and life. Polio and smallpox were conquered. Cancers are often treatable. MS patients have a long life expectancy. We have tiny cellphones and make long distance calls at will. We have an internet. We have dishwashers and wonderful television pictures and trash bags. Why have we not figured out ALS?

These Are Not Sickly People

They are hale and hardy and playing golf and sailing one month, and suddenly ALS hits. We need more ways to show this. Here is one created by a gentleman with ALS.




Every healthy person needs to squirm a little. Nobody is immune.

Wednesday, June 1, 2011

We Hope Scott Pelley Remembers Steve and ALS


If you saw the 60 Minutes piece on the 21st Century Snake Oil , then you saw Steve Watters. He was an ALS patient who went undercover with Scott Pelley to expose the con man with a bogus stem cell cure for a price. Steve was always a thoughtful contributor on ALS message boards, and he turned out to be a huge contributor to the awareness of ALS in his role on that 60 Minutes segment.

Steve Watters has died.

Another nice person. Another achiever. Another contributor. Another funeral.