A Picture Is Worth A Thousand Disconnected Patient Files

Please take a look at this article (thanks to @paullikeme and @epatientdave for the tip) --

http://e-patients.net/archives/2011/11/kenneth-s-spriggs-do-it-yourself-electronic-health-record.html

Now imagine how constructive it would be for physicians to supply a similar template to all newly diagnosed ALS patients to fill in some history of symptoms, of health, and of environmental exposures.

It might even be therapeutic for people to write things down in a manner that could be shared and that could contribute to the set of clues that scientists and other patients need to deal with ALS.

Simple. Visual. Direct. Valuable. Four words that are seldom seen together when dealing with ALS.

Who Wants To Tell A Very Interesting Story With Numbers?

Dr. Google brings many people to this site.

So if Google brought you here and you happen to be a journalist interested in telling a very interesting story with numbers, please write yourself a note. A clinical trial by Neuraltus with the experimental drug NP001 has been providing some very interesting numbers reported by trial participants who post data at www.patientslikeme.com .

This morning Sleepy happened to watch this video with Lizzie O'Leary --

There is a story with numbers about ALS that will knock the socks off the subprime mortgage story if NP001 is something that might actually work to save hundreds of thousands of lives. There are data. There are some compelling faces to put on the story. There are patients in the trial noticing things happening... some good and some not so good. Anything good is a huge breakthrough with ALS. There are patients who didn't qualify for the trial who are trying to reverse-engineer the active ingredient so that they can try a do-it-yourself trial. There are business leaders who will have difficult decisions to make. There are regulators watching. This is a very interesting story with numbers and with people who can bring those numbers to life.

Who wants to tell an interesting story of numbers that are starting to speak?

It's A Project, For Pete's Sake!

Yesterday we saw many congratulatory messages on the first birthday of the launch of the CDC's ATSDR National ALS Registry. As Sleepy watched the electronic high fives and pats on the back, Sleepy also wondered in what other sector do you party one-year post-launch simply because it's one-year post-launch?

Launch+365 is normally a time for some hard looks at project milestones and accountability. It's one of the many spots on the project timelines to evaluate the project status with an eye toward continuous improvement. What is working? What isn't working? What adjustments are in order?

Yesterday stakeholders celebrated. There's no reason to break our arms patting ourselves on the back yet. So far there have been no deliverables of epidemiological data from the project. There is an apparent low patient uptake on the supplemental surveys. Sleepy hopes that while the celebratory messages were strewn yesterday that somebody was working on the project milestones and adjustments to get the right deliverables to the scientists who can use the information.

Perhaps it's the nature of government work to need to sing for next year's supper. Sleepy would rather it had been a song about project milestones and adjustments rather than "Happy Birthday."

Be Careful

Those were my words to a man with ALS as we parted, having discussed some patients' do-it-yourself trial of an experimental treatment. The look on his face made me add, "I realize that the 'careful' bar is a lot lower when you have ALS."

Bright patients have researched and with neither multi-million-dollar budgets nor a cadre of scientists and clinicians, they have decided to roll some dice. They know that the risks are there, but the risk of not doing anything is clear, too.

We watch and we pray that they do no harm and perhaps will find something that will help... or at least will provide some clues for scientists and other patients.

http://sites.google.com/site/alschlorite/

The speed of research and clinical trials and approvals and healthcare delivery can't come close to the speed of ALS. We must fix that!

ALS and Drug Shortages

With serious drug shortages in the news, we have a new tagline --

ALS has the ultimate drug shortage. There are none.

You Asked For My Phone Number, You Asked For My Email Address

Why was that, Dr. Clark?

Car salespeople touch base with even their most infrequent customers when there is a rebate that they would like to know about.

Bankers and brokers touch base with even their most impecunious customers when there is a policy change that they need to know about.

Shoot, our local ice cream stand reaches out to its customers via email so that they know when to stock up for the winter with their favorite flavors lest they miss their chance.

Why don't doctors reach out to their patients as soon as a clinical trial is recruiting that may make sense? Why don't doctors actively call or email patients who may qualify for a newly approved device such as the diaphram pacer that was approved for people with yesterday. With ALS speeding through their patients' vitality at an incredible clip, why do patients not hear about things that may help until their next regularly scheduled appointments. Three months can be the better part of a lifetime for a lot of people with ALS.

Those patient phone numbers work for things other than billing departments. Sleepy wishes that docs would take the same initiative to take care of patients as my car dealer or the ice cream stand.

Whoa, The Government Is Moving Too Fast?

Or perhaps the government is moving without thinking past its fiefdoms.

https://filemanager.capwiz.com/filemanager/file-mgr/alsa/Senate_LHHS_ALS_Registry_FY12.pdf

"The Committee is particularly supportive of the addition of a biorepository component and the development of strategies that can enhance clinical trials and clinical trial enrollment."

It appears that the CDC's ATSDR, the "owner" of the important ALS Registry project, is ready, able, and willing to take on scope creep that will enhance its budget and footprint, and could ultimately take its eyes off of the core mission of providing complete epidemiological data on ALS cases.

In the past few months we have seen how broken the process of getting good clinical trial information to patients is. Having the ALS Registry do an expensive push of information to potential patients won't fix the root problems. It will only add another problem.

Can someone in our government step back and look at the bigger picture? Can someone in our trusted ALS organizations step back and take on a more difficult problem than appropriations for a Registry project? Can someone in our clinical healthcare delivery system take on some responsibility for getting information to patients in a consistent, timely manner?

It doesn't take a Six Sigma Black Belt to figure out that we have a very broken process and taping expensive band-aids on it won't fix it. Who will take on the problem statement (that may leave a little egg on the faces of some in the current process to get information to patients)? Anyone?

Here are just a few of the process concerns that have jumped out to me as I've watched patients take clinical trial recruitment into their own hands in order to fill the Neuraltus NP-001 clinical trial.

• Are patients relying on their neurologists for guidance on whether a clinical trial is a good idea and on which clinical trials hold the most "promise?"
• Are patients getting that information from their neurologists?
• Are members of our ALS organizations' staffs who deal with patients knowledgeable at least on the phase 2 and 3 clinical trials within 500 miles of their locations?
• Are patients and families being led down wrong paths by the proliferation of websites that say they have clinical trial information (but carry information that is incomplete or outdated)?
• Do patients and families know that the most dependable source of clinical trial information is www.clinicaltrials.gov?
• Has anyone talked to HHS about putting a nicer, more friendly gui on www.clinicaltrials.gov so that patients could do things like a zip code search for nearby clinical trials?
• Would a better gui on www.clinicaltrials.gov eliminate the need for redundant websites that are provided for a number of medical conditions?
• Do some neurologists discourage patients from clinical trials? Why?
• Can patients in clinical trials have a formal feedback process that would provide better trial design for the next drug candidates?
• Can the 24-month-from-onset "rule" be revised based on the results of the recent 36-month-from-onset trial?
• Does the CDC's Registry even have onset date (which would seem to be required for any kind of matching of candidates to clinical trials)?
• What are the results of the recently introduced NEALS/ALSA Clinical Trial Expert?

Many of us complain about the length of time that it takes the FDA to evaluate and approve new drugs; however, every day wasted in filling a clinical trial is as critical in the timeline as an FDA day. We definitely have a problem in getting good information to eligible patients in a manner in which they can make informed decisions quickly. To add an expensive feature to a Registry that has its own problems getting people to self-enroll isn't going to solve the problem. We need to step back and look at all of the possible factors and fix some of the problems at the root. Throwing Registry money at this problem will not fix a broken process.

My plumber can offer to fix a structural defect in my home, but that's probably not a good way to really fix the problem.

Obsessive, Multi-Level Fundraising To Defeat ALS - Question 4

Today's question involves using walks as a reason to talk about ALS.

Strategy 1: You can raise ALS awareness with walks, but that does not increase walk revenues; therefore, walk staff time and energy should not be spent on awareness. It is not part of the successful walk formula.

Strategy 2: You can raise ALS awareness with walks, and every opportunity to talk about ALS in the community and in media should be pursued aggressively. The key to raising long-term resources and urgency to deal with ALS is increased awareness.

How do organizational rewards and expectations and priorities affect the awareness strategy selected?

Obsessive, Multi-Level Fundraising To Defeat ALS - Question 3

Business 101 classes usually teach that the flaw in many multi-level marketing schemes is that recruiting becomes more important than the quality and value of the underlying product being sold.

True or False: This theory can also apply to multi-level fundraising.

Obsessive, Multi-Level Fundraising To Defeat ALS - Question 2

Here is today's question. Consider two people --

a. An individual who shows up on walk day and writes a check for $100 and walks

b. A team captain who does online fundraising and encourages $150 from others but makes no personal donation and does not show up on walk day

Who is more valued by the walk cookbook?

Extra credit -- Who is more likely to be a donor and walker next year and the next?

Obsessive, Multi-Level Fundraising To Defeat ALS - Question 1

This is our question du jour --

Walk A: 500 walkers showed up, $100,000 raised, no media covered

Walk B: 1,000 walkers showed up, $95,000 raised, no media covered

Walk C: 10,000 walkers showed up, $92,000 raised, local press and tv covered

Which was the most successful walk?

Great Caesar's Ghost (Again)

A week ago an interesting press release was issued regarding ALS research findings which were about to be published in Nature. That press release caught the interest of major news outlets throughout the country. Obviously the media were starved for some good news about ALS and they got it.

Here is an interesting blog regarding the media buzz --

http://barbarabrenner.net/?p=286

I couldn't agree more with the frustration over optimism being rolled into euphoria because of a finding that can't possibly turn into a tangible benefit until tens of thousands of people with ALS continue to die.

Journalists today clearly like a little help with good ideas and stories. So why don't we make constructive use of that?

There are aspects to ALS that would make compelling media stories that would raise awareness (and therefore raise resources invested in ALS). Why don't we figure out how to tip the press to those in a manner that will help some engaging stories happen in the national media? ALS organizations continue to write materials for a company newsletter rather than tips that will pique major journalists' interest.

Will the news of last week teach anyone how to make more important news next week?

Is This A Zebra Or A Horse?

Physicians are trained that when hoofbeats are heard, they are usually from horses and not from zebras. "Zebra" is their term for an highly unlikely or surprising diagnosis. You don't go looking for zebras when most things are horses.

• Picture the older patient with the hoofbeats of slurred speech. Stroke?
• Picture the younger patient with the same hoofbeats of slurred speech. Alcoholism again?
• Picture the homemaker having trouble opening jars. Arthritis?
• Picture the businessman whose left arm feels funny and whose golf shot has gone all to pot. Stress?
• Picture the young athlete who can't hit the baseball. Time for eyeglasses?

People with ALS have incredibe stories to tell about the long and expensive paths they had to take to get a correct diagnosis. It often takes years for physicians to look past all of those red-herring horses and see the ALS. We don't know how many people die every day from ALS without ever having been diagnosed correctly.

Doctors are trained not to jump straight to that "rare" diagnosis. Even if they suspect ALS, they don't want to make the diagnosis. There is nothing in the doctor's bag that will treat ALS, and there is no more difficult conversation on earth than to share that with a dying patient.

What if there were an effective treatment? Would ALS be diagnosed sooner? Would ALS be a topic that would be on the radar of more primary care physicians, and thus addressed promptly? Would a larger recognized patient population make the world more aware that Aunt Mary may not just have arthritis or that Uncle Joe may not have fallen off the wagon again.

In past decades, markets in many therapeutic areas that did not have effective treatments had been grossly underestimated. Today we have promising clinical trials going on for ALS. Perhaps part of that promise will be that ALS will be diagnosed more quickly and accurately. There may be a lot more hoofbeats in the ALS market than anyone realized.

There Are Two Cars In Each Garage

Picture two houses, each with two cars in its garage.

One family buys a new car ever eight or ten or more years, cares for it, and is not terribly susceptible to that intoxicating new car smell.

The other family loves to trade in and get a new car every two or three years and loves the new car smell.

Each family has two cars in its garage. Which family provides more revenue for the automotive industry? There is no question that the garage that gets a new car every couple of years is General Motors' dream!

Think about ALS and other diseases. ALS never has very many patients "in the garage" at one moment. They exit and enter at a voracious clip in a cruel trade-in program.

Our agencies and government have a tradition of looking at a snapshot of garages to compare diseases. Two cars are two cars. Somebody needs to look at the number of new cars that enter the garages over time. The significance of ALS is much larger than a pair of full two-car garages would ever indicate!

The Most Elegant Solutions To Difficult Problems Are Simple

Here is an elegant solution for a very difficult problem... and we find that Patrick is not only smart, he's delightful!

Enjoy the video and then please pass the link along to everyone you know who works with people with ALS.

Speakbook - How it works from speakbook on Vimeo.

Calling A Day "Global Awareness Day" isn't Enough

We need a roar from all of our ALS and Motor Neuron Disease organizations that decided that June 21 would be Global ALS / Motor Neuron Disease Awareness Day.

Please roar this year.

On June 22 we don't want to have to say, "Who knew?" again this year.

So The Pyramid Is Out

People with ALS don't have the luxury of eating off a well-balanced plate. Perhaps they need their own symbol of good nutritional balance. Any ideas?

ALS Organizations, Please Give Me A Reason To Stop Blog Recycling In 2012!

Here's hoping that all of our ALS organizations will wake up to their roles in ALS awareness. Keeping the disease a secret benefits nobody. Trite, safe, inflexible messaging doesn't work any better in 2011 than it did in 2000. Turning every awareness opportunity into a fundraiser turns people outside your choir away. Here are some trips down memory lane. The opportunities are still there. Next year I hope it won't be necessary to recycle all these thoughts.

http://alsspreadtheword.blogspot.com/2010/03/we-need-to-see-rest-of-stories.html

http://alsspreadtheword.blogspot.com/2009/06/dear-als-pr-machines-lets-set-some.html

http://alsspreadtheword.blogspot.com/2009/01/its-thyroid-awareness-month.html

http://alsspreadtheword.blogspot.com/2008/05/may-was-als-awareness-month-what-were.html

http://alsspreadtheword.blogspot.com/2011/01/enough-basta-assez.html

http://alsspreadtheword.blogspot.com/2010/10/this-should-have-been-huge-news-week.html

Finally, two years ago a man with ALS, Michael Goldsmith, handed us all a glorious ALS awareness day with Major League Baseball on July 4. How could we have muffed his pitch?

We need for our ALS organizations to exert the same savvy and energy that Michael Goldsmith showed to raise large-scale awareness of this outrageous disease.

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.

Cure ALS. Save The Earth.

Today as we focus on the health of our planet, let's consider an investment that will save human lives and the life of Mother Earth.

ALS requires incredible amounts of durable medical equipment. Once you acquire one expensive, plastic-laden device, the disease moves so quickly that you're ready for the next piece of equipment that will permit you to breathe or eat or communicate or move. Healthcare delivery has tons and tons of consumables that you have to buy with these devices.

Anyone who has dealt with ALS will tell you that it takes a lot of stuff to deal with ALS, and caregivers are forced into purchases that give them few planet-friendly options.

Today as we celebrate finding ways to preserve our environment and natural resources, let's consider an investment that will preserve some precious human lives, too. ALS research is underfunded. Let's fund it sufficiently and raise the bar on research efforts so that the cause and cure may be found. That will be good for people and for the planet.

Come to think of it, finding if there is an environmental cause that triggers ALS would be extremely good for our planet in many ways. Nobody wants ALS, and nobody should have to live its path of personal and environmental destruction.

Physicians, Nurses, Aides -- Where Do You Look For Car Or Hotel Reviews?

Dear Healthcare Professionals,

I read in this morning's paper that more of you are going online to market your practices and to teach patients what they need to know about wellness and their conditions.

Here's a news flash. That's a two-way street!

You should also be going online to learn about ALS. There is a whole lot for most of you to learn. I'm not talking about slick CME courses (although there are some if you take the time to register and login at the CDC's ALS Registry site. ) I'm talking about learning about ALS from the people who are in the trenches. Do you think you already know a lot about ALS? Do you think that it's so "rare" that you don't need to know about it? Do you think that once you've seen a case or two that you've seen it? Wrong on all counts.

Here is some gritty continuing education for you. Simply take a look. You may have to register on some of these sites to be able to view the conversations, but you can handle that.

http://www.patientslikeme.com/forum/als/topics

http://groups.yahoo.com/search?query=living_with_als

http://www.als.net/forum/Default.aspx

http://www.alsforums.com/forum/index.php

If you are shopping for a new car or a vacation spot, I'll bet you're willing to search the internet and learn. How about putting the same effort into learning about life with ALS? Oh, and it's a family disease as you'll soon see. Caregivers run themselves ragged and kids are caught in a nasty pit of caregiving and emotions. It's a disease where patients have to rely on each other to figure out how to navigate the conflicting information they get from the healthcare system. It's a disease where patients get tired of having their peer friends die. It's a disease where professionals who are supposed to help them don't really know enough to do so.

Take a look. How about putting as much effort in understanding ALS as you would in shopping for a new car or choosing a hotel?

The ALS Treatment Tourney Makes The World's Smallest Set Of Bracket Choices

How are your men's NCAA hoops bracket picks doing? Did you pick with your heart rather than your head? Are you questioning the original seeds? Are you looking up data on VCU now that they've become the hottest team in the tourney.

With a few google searches, you can find data on every team in the NCAA hoops tourney in exquisite detail. You can make informed choices. You can override your data sense and pick with your heart if you like, but you can swim in data if you like.

People with ALS don't have data to help make informed treatment choices. Shoot, they don't have enough treatment options to give them even a two-round bracket.

What is wrong with this picture?

The Fight Against ALS Needs A Guiding Star

An activist, not merely a celebrity spokesperson...

Get Busy

We Grasp At The Same Straws - Over 70 Years Later

A Reuters story on the potential use if Vitamin E in ALS was published yesterday.

http://www.reuters.com/article/2011/03/16/us-vitamin-e-users-show-lower-als-risk-idUSTRE72F9B320110316

Google "Vitamin E ALS Eleanor Gehrig."

We grasp at the same straws over seventy years later. What is wrong with this picture?

We Need Some "I Was Fine As-Of..." Nametags!

For advocacy day on Capitol Hill, wouldn't it be interesting for those many people with ALS to have some nice big badges with their "I was fine" dates. That would get the attention of those healthy young staff members who listen to our case for increased research funding! It might make them squirm, and that's good.

Most people with ALS were golfing or sailing or shooting hoops or playing catch with the kids not so long ago. ALS strikes with a nasty punch, and vibrant people end up in wheelchairs or with android voices speaking for them in a matter of a few months.

Maybe that "I was fine" date would make some interesting impressions on some vibrant people who can make a difference in research funding.

Lord, What's A Cubit?

The world likes to measure the "problem" of a disease in the number of patients affected today. We need to learn to tell the story better -- that the "problem" is actually the way we are measuring the ALS problem.

We used to measure boats in cubits and shoe size with machines that dumped xrays in our feet. It is not unprecedented to change the paradigm for measuring something.

So... how do we quantify the real problem when we seek attention and resources for ALS? What's the pertinent measure?

• I would love to have a "wow" visual to show the problem of pouring a large incidence into a small prevalence.
• Is there some kind of incidence::prevalence ratio that makes the ALS pop up as a more critical problem than other diseases (that are nonetheless difficult but not as quickly fatal)?
• One good thing that I can see coming from a reduced perception of prevalence is that asking for quicker SSDI benefits or better homecare coverage or continuing veterans' benefits should not be as difficult since the cost would be perceived as smaller. Perhaps we can actually leverage that "it doesn't affect many people" perception and step up the benefits available to those dealing with the beast.
• The case for research is a tough one unless we can produce numbers that show the market value of expanding that prevalence number. That number would grow and grow with some life-extending therapies.

I hope that we can use our heads to explain the problem better to the public and to our government. We all know that ALS is a problem... but the old measures will make it continue to live in the shadows. Urgency is not stressed by fixating on how many people are alive with ALS today. There are not enough who are permitted to stay alive today. That's the problem!

Every Day Hundreds Of People Have Michael's Reaction

Every day. Over and over and over. Every day. Fathers and grandfathers and mothers and grandmothers are diagnosed and everyone has the same thoughts. When will we stop this continuous, outrageous madness?

"He says: 'I've got a real rare disease called Lou Gehrig's disease,'" Michael recalled. "I had heard of it, but I had never understood it. Immediately, my mind jumps to what does that mean? My mom (Lee Ann) had colon cancer, and she survived that, so I'm like, 'What kind of treatments do they have or what kind of rehabilitations can they give you?' He's like, 'Well, it's a disease where there is no cure for it ... and there is nothing that I can do.'

Read more: http://www.kentucky.com/2011/03/04/1657338/fathers-death-gives-former-tates.html#ixzz1Fjb4d45H

Ethel, I Think We're Fighting A Losing Game

Watch a classic moment in television.

Watch the candy. There are only four pieces of candy in front of them at any moment in time, but they keep coming and coming and coming and coming.

___________________________

Monday, February 28, is Rare Disease Day. It's a good opportunity to shine some light on diseases that get little attention.

ALS falls into the "rare" category because of a definition found in the Rare Disease Act of 2002 -- "any disease or condition that affects less than 200,000 persons in the United States."

At any moment in time, there are far fewer than 200,000 Americans with ALS passing in front of us, but the throughput of this disease is relentless. There are around 6,000 new diagnoses in the U.S. every year, and there are a similar number of funerals. "Rare?" Perhaps if you only look at those few living patients right in front of you, but the line goes fast and the patients die quickly.

It's not funny, but that line of chocolates that just can't be dealt with quickly enough tells the story. Ethel, I think we're fighting a losing game. We must change our strategy to deal with ALS. We must slow down or stop that line.

Let's Compare

Which makes a more compelling advocacy case?

http://www.alsa.org/advocacy/

http://www.alz.org/join_the_cause_advocacy.asp

It's impossible to drive forward if we're always looking in the rear view mirror at modest accomplishments. The fight against ALS needs smart business cases. We need meaningful investment in both research and in basic assistance for those dealing with the disease today.

Same old same old will give us same old same old, and that's just not getting the job done! It's wrong for people today to be told that they have Lou Gehrig's Disease with Lou Gehrig's prognosis.

The "A" Words Can Be A Confusing As The "A" Diseases

As a young child, Sleepy always had trouble confusing the word "anecdote" with the word "antidote." It was a cruel vocabulary test that had one of those "a" words that challenged Sleepy's little brain to remember which one was the story and which one was the foil to something bad.

Sleepy finally has them straight, but the irony of that confusion persists. So often with a fatal disease with no effective treatment, we hear the anecdotes and confuse them with antidotes for ALS.

Meaningful data from our national registry is urgent. The importance of patients who are trying treatments to track their data in a public manner is urgent. Improvements in our clinical trial system to enable patients to contribute to scientifically meaningful projects is urgent.

Until we address those urgent needs like we know the meaning of the word "urgent," we will continue to confuse anecdotes with antidotes.

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.