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

Interesting perspectives from an empowered cancer patient...

"Let Patients Help!"

What If Major Organizations Declared A Global Awareness Day...

...and nobody actually did anything?

http://alsspreadtheword.blogspot.com/2011/06/calling-day-global-awareness-day-isnt.html

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!

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.

Michael Bloomberg Gets It

Take Ten Minutes to Think About ALS

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!

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!

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.

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.

What Are The Odds?

ALS advocacy involves starting the simple conversations that cause so many connections to ALS to come to light.

Last week alsadvocacy was in seminars with 20 people. Wearing a www.stealingpieces.org shirt to breakfast one morning was a conversation starter. A couple said that they had known General Tom Mikolajcik, a hero in the fight against ALS who enabled the service-related benefits for veterans stricken with ALS.

Later the next day prayers were requested for a friend of a meeting leader who had just received a serious diagnosis. It was ALS. Unbelievable.

That caused even more conversations in the group about the disease. One gentleman shared that he had lost a college roommate to ALS. Another talked of his uncle who died from it.

Twenty people. So many ALS connections. This disease is not as rare as people like to think. It strikes and kills quickly. It then moves on to strike and kill more people. We must keep the conversations and connections alive so that the world might realize that it is a problem urgently in need of a solution. We must speak up for all of those who have been silenced by ALS.

The Leadership And Results Are Clearly Refreshing

This message was posted on the ALS Association's facebook wall... from the ALSA President and CEO --

I had the distinct pleasure this afternoon of receiving a phone call from Eddie Martiny, General Manager, and Marc Sherman, FM Operations Manager, of the Clear Channel stations in Houston. They were calling at the request of Mr. John Hogan, President of Clear Channel Radio, who received my letter asking for a public apology. They were interested, compassionate and want to help us with an awareness campaign through their sister stations. They also gave me permission to share with you the words of the public apology that was made on KKRW station on Tuesday:

“KKRW and Walton & Johnson would like to apologize for insensitive remarks about Stephen Hawking’s physical condition that have caused distress to people with disabilities, including those with ALS – which Professor Hawking suffers from – and their families. We recognize that there are many people in Houston who suffer from serious, debilitating illnesses and no offense to them was intended.”

They are working on producing public service announcements, and will run them on all of their stations during the next couple of weeks. I urge all of you to join me in thanking them for their concern and their response to the ALS community. I want to go on record with a huge thank you to the management of Clear Channel Communications, who recognizes the mistake that was made and are now doing everything they can to help us.

Clearly the use of online media to get Clear Channel's attention along with the refreshing ALSA leadership to meet the problem head-on made a difference.

This is ALS advocacy. This is ALS awareness. This is newsworthy. This is a huge step in a good direction.

Awareness Is Imperative To Solving This Mystery

The fight against ALS ignorance needs this kind of leadership. Following was posted on the ALS Association's facebook wall:

Mr. John Hogan, President
Clear Channel Corporate
200 East Basse Road
San Antonio, TX 78209


Dear Mr. Hogan,


I am writing this letter in response to comments made on the Walton and Johnson show on Monday, May 16th. During their time on the air they made comments about Stephen Hawking and his battle with ALS. The comments were ill informed and offensive to the over 30,000 people and their families who struggle with this disease every day. As President and CEO of The ALS Association, I invite your station to join our efforts to educate people about this terrible disease. Our mission is to “lead the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.”

As the only organization dedicated to this fight on all fronts, I hope you can understand why we were offended by the on-air remarks. ALS is a deadly disease that robs people of their body but not their minds. Within a trapped body, a person suffering from ALS lives with the daily challenge of communicating with their loved ones as well as the outside world. As you can imagine, many of these people listen to your radio station as a link to the outside world which is one reason the comments were so insensitive. ALS patients struggle each and every day with a disease that has no known cause and no cure. Piece by piece their bodies are robbed of everything but their ability to think. If you will, think about being perfectly still—not even so much as a blink for two or three minutes, and then imagine what that is like for someone 24 hours of every day.

I would like to direct you to our website at www.alsa.org so that you can be better informed about this horrific disease and the fight we are leading to help those who live with the disease. There you will find stories of courage and determination as well as stories that will break your heart. They are stories of mothers, fathers, sisters, brothers, daughters and sons who fight a battle none of us wish for them. It is a disease that can strike any one of us and knows no boundaries of age, race or gender. At any given point, someone within your Clear Channel family might very well be the next diagnosed case.

Awareness is imperative to solving this mystery. Please turn this negative into a positive by issuing a public apology. The ALS Association will be more than happy to supply you with educational information so that your listening public has the opportunity to help us in this fight.


Sincerely,



Jane H. Gilbert
President and CEO
The ALS Association

This Was A Powerful Message In Our Nation's Capital

This Is A Right-To-Life Issue

Earlier this week some radio buffoons decided to do what radio personalities sometimes do to boost their ratings, and they made some horribly disrespectful, ignorant statements regrading Stephen Hawking's physical condition. Stephen Hawking has motor neuron disease. ALS (Lou Gehrig's Disease) is also a form of motor neuron disease.

Rather than have an intelligent discourse, the radio clowns made fun of the man's physical state.

This is a right-to-life issue. I'll not give the fools with a radio show the benefit of added publicity on this website (your friend Google can find them if you're that curious). All who are interested in respect-life issues need to pay attention and demand respect for those who are dealing with ALS. I also expect our ALS organizations to make some simple and direct statements about respecting the valuable lives of those with ALS.

Thanks, Governor

"I want to take the diagnosis and try to do good."

http://www.boston.com/lifestyle/health/articles/2011/05/19/former_massachusetts_governor_cellucci_to_take_als_fight_public/

He'll not only raise millions for research, he'll also put ALS on the radar of many movers and shakers. ALS needs to be moved and shaken.

We Need To Keep Making People Curiouser and Curiouser

http://dcist.com/2011/05/shirts_memorializing_als_sufferers.php

Take A Look At This, Washington

The Piece by Piece display made a big impression in Freedom Plaza, today. This is ALS awareness that people will remember.

It's Great To Preach To This Choir

See ALS Association's facebook wall with the activities kicking off the 2011 Advocacy Conference.

A large youth choir sang at the candlelight vigil.

One of these kids may be tomorrow's President to raise the public urgency of ALS... or tomorrow's Nobel-prize winner who finds the cure. None of these kids will forget ALS.

It Was A Good Day For ALS Awareness

Nothing Is Easy With ALS

This weekend hundreds of ALS advocates are converging on Washington, DC.

You may remember when travel was fun. You got all dressed up and got on the train or airplane for an exciting trip and a free deck of cards. How that has changed. Even for the most hale and hardy, airport routines and demitasse airplanes and delays take a lot of fun out of the experience.

Add ALS to that equation, and the challenges and frustrations of travel become incredible. The disease itself turns simple things into barriers. Those simple things and barriers are both physical and human. Most transportation professionals are clueless about ALS and make the journey even more difficult.

People with ALS who try to make a difference by contributing to ALS advocacy are our heroes.

Perhaps the rest of us should figure out how to do more to contribute to ALS awareness for everyone our heroes encounter on their journeys.

This Disease Is Just Wrong!

Former Lobo Pat Grange in a battle: krqe.com

You'll See Things You've Never Seen On Broadway

Here's a pic of Daley Plaza in downtown Chicago this morning.

It's ALS Awareness Month in a big way in the Windy City!