ALS Spread the Word

There's Irony In Those Tweets

2012-01-07T07:02:00.002-05:00

A tweet yesterday from an ALS organization...

Who does #ALS affect? How many people does it affect annually in the United States? Does it effect men more than women?http://ow.ly/8kMgq

I was anxious to click on the link to find the answers (which I don't believe we really have).

Now that's irony.

Perhaps 2012 Will Force Some New Dimensions to "ALS Advocacy"

2012-01-06T06:55:00.003-05:00

There are some interesting things bubbling that may move ALS organizations to break out of their ruts.

There is an ethics issue that would be wrong to ignore.
We spend millions on an national U.S. ALS Registry, yet are patients really self-enrolling? Why not? Mission not accomplished.
Studies and organizations have touted ALS multidisciplinary clinics as providing clearly better outcomes for people with ALS, yet our veterans with service-related ALS are not provided with multidisciplinary clinics by the VA. What is wrong with this picture?
Newly diagnosed ALS patients report vastly different experiences in clinical trial recommendations from their neurologists. Some encourage, some discourage, some seem clueless.
ALS is still the best-kept-secret killer disease.

Sleepy won't expect miracles regarding number 5 (it's not new) but expects that the first four will boil to the point that our ALS organizations will need to step up and do some new things. Same old same old won't cut the mustard in 2012.

A Picture Is Worth A Thousand Disconnected Patient Files

2011-11-26T06:36:00.006-05:00

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?

2011-11-20T06:03:00.006-05:00

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!

2011-10-20T06:55:00.004-04:00

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

2011-10-12T07:38:00.002-04:00

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

2011-10-04T10:07:00.003-04:00

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

2011-09-30T09:44:00.004-04:00

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?

2011-09-27T07:05:00.005-04:00

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

2011-09-09T05:56:00.004-04:00

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

2011-09-06T07:51:00.003-04:00

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

2011-09-03T07:23:00.005-04:00

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

2011-08-29T08:30:00.006-04:00

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)

2011-08-28T07:07:00.004-04:00

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?

2011-07-23T06:50:00.009-04:00

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

2011-07-14T05:56:00.010-04:00

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

2011-07-01T07:50:00.005-04:00

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

2011-06-16T08:29:00.003-04:00

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

2011-06-03T05:27:00.004-04:00

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!

2011-06-01T07:10:00.005-04:00

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

2011-05-28T06:37:00.004-04:00

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

2011-05-20T23:08:00.005-04:00

...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

2011-05-06T07:47:00.005-04:00

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

2011-05-02T07:17:00.003-04:00

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.

<p><a href="http://video.adelaidenow.com.au/1903915331/Royal-Wedding-time-lapse">VIDEO: Royal Wedding time-lapse</a></p>

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.

2011-04-22T07:13:00.003-04:00

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.