Perhaps We Need A Clara Peller As ALS Spokesperson

I feel like saying, "Where's The ALS?" again.

http://www.healthfinder.gov/nho/nho.asp

Today's Young Student Is Tomorrow's Scientist, Physician, Legislator, Journalist, Inventor, Mover, Shaker,...

Teachers love having access to interesting, grade-appropriate lesson plans that meet their state educational standards. They simply appreciate having new ideas and help putting together engaging lessons for their students that make a point... or two... or three.

There are organizations with websites that specialize in distributing those lesson plans to educators. There are foundations that focus on youth and quality educations. There are countless relatives of those who have been lost to ALS who are good teachers who could contribute to lesson plans. There are dozens and dozens of topics related to ALS that could be built into interesting lesson plans that would teach students about literature or math or history or political science or the arts (and tangentially about ALS).

Who doesn't remember that class project or book that piqued a vocational interest or influenced a class selection in college? We need to be planting the seeds so that some young people might find a spark of interest about ALS. They will be come ALS-aware adults who will make a difference.

Think about some of the lessons that could be built around these (and hundreds of others) that could sow ALS lessons within a bigger theme --

• Tuesdays with Morrie
• Lou Gehrig's Amazing Records
• What Do Disease Numbers Mean
• Clinical Trials
• Medical Quackery
• Famous Performing Artists (The ALS list is long and diverse)
• Mao
• A Day In The Life Of A Research Scientist
• How Laws Are Passed In The U.S.
• Clever Inventions To Help Disabled People
• Famous Athletes (Again, the ALS list is long and diverse)
• Veterans' Battles After The War

We reap what we sow. Kids are more than cute fundraisers.

Curing ALS Is Hard. Adding A Button To Your Website Is Not Hard.

The CDC's ALS national registry is a place to guarantee that information on everyone with ALS (and the clues that he or she may harbor) will be retained for epidemiologists and scientists. We finally have a place to start collecting the dots so that they might be connected.

The process to fill the registry is interesting. The CDC will mine data in Medicare and Medicaid and other files looking for ALS diagnoses. At the same time, people with ALS are able to self-enroll via a website - www.cdc.gov/als . The self-enrollees are able to supply some added information that the CDC would not have found fishing for data, and self-enrollment guarantees that a person with ALS is counted.

The CDC's marketing campaign to encourage people with ALS to enroll has been less than stellar. We all lose if people do not self-enroll. We all lose if the registry's data indicate that there are few people with ALS. We all lose if scientists don't have a complete picture of cases.

Why have all organizations with skin in the fight against ALS not put button-links to the registry on their websites? Sleepy does not understand why a person can go to the websites and blogs and facebook pages of so many organizations and not see a simple link to encourage people with ALS to self-enroll. Why?

Here's the page with the snippet of html that you need to add a button to a website --
http://www.cdc.gov/SocialMedia/Tools/ButtonsGallery.html

Dealing with ALS is hard. Curing ALS is hard. Adding a registry button to your website is not hard.

All people with ALS deserve to be counted, and certainly the ALS organizations that lead the fight can encourage them. Each person counts, and the days of burying the clues when we bury the thousands who die from ALS should be over.

Here are a few organizations that have failed to add buttons yet --

http://www.bettysbattle.org/
http://www.alscenter.org/
http://www.alsworldwide.org/
http://www.pcut.org/
http://www.prize4life.org/
http://www.projectals.org/
http://www.alstherapyalliance.org/
http://www.columbiaals.org/
http://www.alsresearchcenter.org/
http://www.miami-als.org/
http://www.cpmc.org/services/als

http://www.patientslikeme.com/
http://www.rilutek.com/

http://patients.aan.com/disorders/index.cfm?event=view&disorder_id=845

This is not hard.

p.s. When you add your button, I'll be happy to take you off the list. Thank you.

p.p.s. Special thanks to ALSA and to Les Turner ALS Foundation for never making the list.

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As of Feb. 18, we're glad to see registry buttons at www.als.net and www.augiesquest.org and www.wingsoverwallstreet.org . Looking good! Thanks, all.

As of Mar. 3, we're happy to report a registry button at www.als-mda.org .

We're making progress!

Unfortunately The Message Is Timeless

This is a truly moving video --




Check the dates.
Tom died in 2005.
The video was made in 2008.

The cause of ALS is still not known. There is still no cure.

Let's step up the fight against this disease. It's outrageous that videos of hope can be recycled year after year. How many people were caught by the beast after Tom?

We all must do better!

Who Would Have Thought That This Theme Song Would Be So Profound?

"You take the good,
You take the bad,
You take them both and there you have
the facts of life. The facts of life."
- Theme from The Facts of Life, Al Burton, Gloria Loring, Alan Thicke

People with ALS often try off-label treatments or experiments that are not part of a clinical trial. This is natural with a disease where there is no existing effective treatment and a lot of "promising" science with a dearth of deliverables.

Patients and those who promote various experiments owe it to all patients to record detailed data thoroughly and make them available to other patients. Too often we see anecdotal evidence of improvement recorded but fail to have data on patients who tried things without improvement.

www.patientslikeme.com offers an area for patients to record their progress (or lack thereof). It allows patients to record points in time when treatments were started and stopped. It's free. It's searchable. There is no excuse for not using it to record the results of patients' experiments.

Too often we see people promoting promising treatments only to find out that their loved ones who tried the treatments and seemed to have improved have subsequently died. We owe it to all in this battle to have all of the facts in a public place for other patients to make informed choices.

People with ALS are certainly capable of sorting through the good and the bad. It's wrong to forget to write down the bad.

Picture This -- What Do These People Have In Common?

There are a lot of famous people who have died from ALS.

There are a lot more famous people who have lost parents to ALS.

How about a nice poster/ad with a hundred or so pictures of famous (or notorious) people who have lost parents to ALS? What do these people have in common? Perhaps this would work for ALS awareness month. Depending on where you are in the world, that would be May (which features Mothers' Day) or June (which features Fathers' Day).

It would make an impression and drive home the fact that regardless of fame and fortune, ALS has a really bad outcome.

What's Underneath It All?

ALS is a disease with no known cause and no cure. Decade after decade we hear about "promising" science, but so far, the promise hasn't delivered what is needed to stop this terrorist of a disease.

When we hear of optimistic scientific breakthroughs, they are often related to some very specific scenarios -- specific mouse models or specific genes.

The term "the tip of the iceberg" is certainly one that comes to mind whenever we hear of new "promise."

My question for ALS researchers who have found reasons for optimism is this -- Are we looking at the tip of the iceberg, the tips of the iceberg, or the tips of many icebergs?

Enough! Basta! Assez!

"Those who cannot remember the past are condemned to repeat it." -- George Santayana

"You've got to change your evil ways, baby." -- Santana

Think about the course of ALS -- a person often goes from healthy and vibrant through a nightmare of a decline to the grave within a very short period of time. This cycle constantly recruits new people. Its a kind of terrible revolving door. New patients and new families need crash course about the disease and dealing with it. New families mourn and grieve untimely deaths. Over and over and over, ALS organizations deal with the people entering the door and see them through the exit.

Sleepy lived the ALS nightmare, losing a relative to the disease 14 years ago.

If you took a snapshot of the outlook, the therapies, the "promising" science, the organizational fragmentation, the lack of awareness, and the theories in 1997 and put it next to a corresponding snapshot today, you would see very little difference. The wheelchairs are better now, but that's about it. The cause of ALS is still a mystery. The downhill course continues to be a difficult one for patients and families. There is still "promising" science (always with air quotes around that "promising" word). Organizations still compete rather than find ways to raise the tides of resources for all. The general public still does not have ALS on its radar.

We do the same things over and over. The patients change. The families burn out. The staff names at the organizations change. Tactics and approaches are horribly static. We've fallen into a rut of Groundhog Day with stakes far higher than weather forecasting. We have not delivered meaningful change.

It's time for a new war on ALS. The same old same old has failed. We need to shake some thunder into the movement. Organizations need to focus on ALS as the enemy (and not each other). It's time that the world learned about this monster of a disease, and it's time for everyone on earth to know to fear a disease that can strike anyone. It's time to pull together for added resources and new strategies.

The revolving door has caused a kind of institutional amnesia where we repeat the tactics of the past over and over.

We all have failed. Enough is enough.