I Was Hungry...

They say that the bitterest words at final judgment will be, "I was hungry, and you formed a committee."

Perhaps a fitting corollary to that will be, "I was dying, and you had a meeting."

Food for thought in this, a big year for big ALS meetings.

What Are The Barriers?

A few months ago I was discussing ALS with some people far smarter than I.  A gentleman asked me a thoughtful question -- "What are the barriers between you and a treatment for ALS?"

Wow.  I had to think about that.  I had a diverse list of answers.

What if various stakeholders in the fight against ALS put heads together and were candid with each other about the barriers they perceive?

We all might learn a few things.  We all might be able to move a few of those heavy sandbags.

Happy Physicist Taught Us All A Few Things

A gentleman with ALS who went by the online name "Happy Physicist" died yesterday. 

HP taught us all much. 

He was a scientist and is best known for his constant study and experimentation on himself to see if he could unlock a clue to treating ALS.  He understood science and he knew what ALS would do to his future if he sat back and watched.  And HP encouraged all people with ALS who tried things (and they all do) to share their data.  "If it is done in secret, then it is done in vain."

There is another mark that he left that some may not remember, so I take this sad day to remind us all.

HP studied available clinical trials and signed up for one he thought had promise -- Neuraltus NP001.  HP also knew that a day waiting to fill a clinical trial was as precious as a day waiting for the FDA or for scientists.  He took matters into his own hands to get that clinical trial filled quickly.   He used every social media device known to man to let people with ALS know about the trial.  He was a gazelle.

HP was from Bloomington, Indiana, and he traveled to Lexington, Kentucky, for his clinical trial infusions.  That was a long drive but worth it to HP. On one trip, HP got online and found the ALS Association Lexington support group meeting was happening while he was there.  He showed up at the support group meeting to try to recruit his peers to give the NP001 trial a whirl.  Here's the shocker -- they had no idea of this clinical trial opportunity in their own back yard.  Several signed up right away.

So the next time clinical trial sponsors or organizations or research scientists complain about patients not willing to enroll in clinical trials, look upward and remember HP, and tell them that perhaps someone should simply tell the patients about the trials.

Thank you, God, for HP.

Prevalence Is A Red Herring

For years we have been told by our largest ALS organization that disease prevalence is the "gold standard" by which the public sector measures the relative impact of diseases.  That's just the way it is.

Questions from Congresspeople or Senators about constituents with ALS are typically answered with a logical guess based on a number that has been couched and hedged for years -- "As many as 30,000 Americans have the disease at any moment in time."  Carefully worded, eh?

Everybody knows somebodies who lost somebodies to ALS.  Oh, it's so easy to want that prevalence number to be higher so that ALS will rank higher on America's priority list.

That's a red herring -- a big stinky red herring.

We believe that as many people are diagnosed with ALS as MS every year.  That's incidence.  

The number of people living with ALS at any moment (prevalence) is a tiny fraction of those living with MS.  What happened to all the people who were diagnosed with ALS?  Hint:  It's not good.

Does smaller prevalence make ALS a smaller problem than MS?  Heavens, no!  It makes it a much deadlier problem.

High incidence and smaller prevalence form a toxic combination.  If you only look at prevalence, you are missing the boat.  Low prevalence does not make ALS a small problem. It makes ALS a huge problem.

So as the ALS Registry numbers unfold, we'll probably find in the data that there are far fewer than 30,000 people living with diagnosed ALS at any moment in the US.  Should we avoid that low-prevalence fact?  We need to stop leaning on a shaky prevalence guess that feels good for fundraising and speak to the data.  High incidence paired with even smaller prevalence mean that we have a large, urgent problem.

It takes a smart hound not to be thrown off by the scent of a stinky fish.  We need to be smart in the fight against ALS.  Leaning on an assumed "gold standard" with a shaky number isn't going to defeat ALS.

This troubling ramble that worships the red herring is from the report of the CDC's 2012 ALS Registry Annual Meeting at http://wwwn.cdc.gov/als/Download/2012%20ALS%20Annual%20Meeting%20Summary%20Report.pdf

While he did not want to hide information, it could possibly come out that there are not 30,000 people 

with ALS and that it is much lower.  There would be a lot of negative connotation about what this 

all means if there is a map with people in each state.  He could hear appropriators and 

Congressman saying, “You only have 2 people in the whole State of Texas who have this 

disease?”  He thought it was very important that consideration be given to everything in terms of 

research projects, because the intention was never to figure out the number of people who have 

the disease.  If incidence is higher in one state, that is important.  While they should not hide 

information, they should also not be distributing information that could be damaging to the 

research tool they wanted to create, particularly in a budget-conscious environment.  That could 

hurt the overall goal of finding a treatment and cure. 

[Hat tip to The ALS Battlefield for all his work.]

Let The Data Speak

What are the barriers between people with ALS and a treatment?

That's an important question.  There are some answers that may be surprising.

Organizational secrecy causes some big barriers, and it serves nobody well except organizations.

Think about it.

Let the data speak.

Please Love Us (And Our Friends) For Our Minds, Too

Dear _____,

It's that Walk time of year.  As a participant in past Walks, we want you to be among the first to sign up and help us raise valuable dollars in this year's Walk.

Please sign in online and donate what dollars you can and tell your friends and ask them to donate as many dollars as they can.  Spread the word.  It makes a difference.  Your contributions advance the valuable work of our organization that is focused on beating ALS.

Thank you for your past contributions and we look forward to your help and the help of your friends and theirs and theirs as you all contribute valuable dollars to help in this Walk to fight ALS.

Sincerely,

________________

Ok, now simply substitute the word "ideas" for "dollars" and substitute "Advocacy Effort" for "Walk."

Get my drift?

Dear People Invited To The CDC ATSDR ALS Registry Surveillance Annual Meeting Today

If the veil of secrecy is required, please explain that requirement to us.

If the veil of secrecy is desired, please explain that to us, too.

Such secrecy is not healthy for good project governance and is clearly not in HHS's spirit of patient-centricity.

Thank you.

Howdy, Partners

We think that the supporters of the CDC's ATSDR National Registry and our major ALS organizations deserve some candid and clear information about who has been paid to do what from the government funds that we fought hard to have approved.

From ALSA's 2012 Annual Report, the most recent on its website, under the heading of "Fighting for the Interests of the ALS Community," there was mention of a "partnership" with the CDC to help raise awareness of the National ALS Registry.  There was absolutely no mention of any kind of contractual or vendor relationship or compensation related to the $6 million which we taxpayer/advocates requested of all taxpayers for the Registry.

 

 

Then we stumbled across this cool million (quite by accident) a few weeks ago at usaspending.gov.

 

 

And what in the world is this about?





 

We understand that the ALS Registry powers that be are meeting in Atlanta this week.  We hope that they'll shine some sunshine on their proceedings and processes and "partnerships."

We Should Have A Large, Angry Crowd By Now

Around 10 million people have died from ALS/MND since Lou Gehrig's diagnosis in 1939.

That's like the entire population of Belgium or Sweden.

That's an outrageous loss of life.

Who can lead the many more loved ones of these 10 million people into a cohesive movement?  The base grows, yet the engaged base doesn't.

Porquoi? Varfor?

We Have Three Very SImple Questions Regarding The CDC's ATSDR National ALS Registry

What percentage of the total patients in the Registry have been identified...

Q1: Both by your passive data mining and by self-enrollment?

Q2: By passive data mining only and not by self-enrollment?

Q3: By self-enrollment only and not by passive data mining?

How else are we to know the effectiveness of the self-enrollment efforts?  Whoops, I guess that's a fourth question (but only if we can't get answers to Q1, Q2, and Q3).

And if we can't get the answers because of some OMB policy, then yet another question is whether the OMB gag order is OMB's alone or whether there was an agreement presented to OMB by the CDC which prevented this disclosure.

Yes, it turned out to be five questions, but there are only three if we get the simple (and important) responses to Q1, Q2, and Q3.

The Greatest Day Ever For ALS Awareness Was July 4, 2009

http://en.wikipedia.org/wiki/Michael_Goldsmith

Through the work of one wise and driven man with ALS, every major network and every major publication carried an ALS feature.

This website gets a pretty steady amount of traffic.  On that July 4 weekend four years ago the traffic was astronomical.  It came from thousands of people searching for words related to ALS.  Never before, never since has there been anything like it.

"4 ALS" wasn't about fundraising.  It wasn't about an organization.  It was about ALS awareness and it worked.

Michael Goldsmith, we miss you.

"Mom Is Still Mom"

If You Could Propose One Idea To Improve Healthcare Delivery...

@phrma asked us on twitter, " If you could propose one idea to help improve health care delivery in the United States, what would it be? - See more at: http://www.phrma.org/phrmapedia/conversations/improve-us-health#sthash.KrzGflZr.dpuf "

If anyone knows where the rough spots are in healthcare delivery, its a person with ALS or a caregiver.

 

This idea is simple. It's incredibly simple. It's low-tech.  Its need reflects a healthcare delivery system that still doesn't get patient-centricity though.

Dear people in the entire healthcare delivery process, I, the patient or caregiver, am a valuable resource for fixing a few things that aren't hard to fix.  Please listen to me.  Really listen.

After waiting for an appointment under the racket of a waiting-room television, I mentioned to the receptionist that it would be nice if there were a quiet area for patients who choose to read or work.  Even my car dealer does that these days so that I can be productive while I wait.  Did that suggestion make it to a staff meeting or a process-improvement team at the doctor's office?  Probably not.  I think a lot of those patient comments are ignored by the front-line folks because the patient can always mention them on the customer satisfaction survey.  Besides, is the receptionist expected to be a waiting-room change-agent?

When I said to the physician, "Gee, the walls are thin in these exam rooms," that was a big clue that I heard things that were none of my business.  What happened to that comment?  Probably nothing.  Yet we spend gazillions on HIPAA forms.

When I as a caregiver mentioned to the doctor that it took me two trips to the BMV to get the handicapped hang tag and if the doctor's office simply kept those forms, it would only have taken one, did anything happen to save the next caregiver a trip?

Healthcare delivery stakeholders, your patients are a gold mine.  Are front-line healthcare deliverers motivated to be part of solutions?  Between it's-not-my-job syndrome and leaving the voice of the customer to the customer satisfaction surveys, we miss the gold mine.  Are patients who make observations and suggestions valued or are they wasting your valuable time?  It's up to you, healthcare delivery.

We Need More Idea-Thons To Defeat ALS

We're so good at walk-a-thons.  Let's get really good at idea-thons.

The idea struck me during the consensus-building final portion of the Team Gleason ALS Research Summit yesterday. www.teamgleason.org/summit

It's harder to do online than they did at the tables, face-to-face, but I think some clever people could come up with a good online format that should include everyone -- rocket scientists down to low-i.q. bloggers.

This would be like speed-dating for ideas.  Get some sparks of creativity out there.  Capture them.  See if they generate other sparks or plop.  Move on.

In an online, chat-like format:

• Pick a general topic
• Have someone float an idea
• People who want to discuss stay in the chat and start chatting
• People who don't want to discuss or who don't like the idea stay on the sideline
• Have at it for fifteen minutes
• Float another idea...

Eventually the idea bag is full and it's time to deliver (thanks, Dreamfinder and Figment), but in the fight against ALS, we've not been very good at the new ideas. The more ideas you have today, the more ideas you'll have tomorrow.

Yesterday we had sparks of creativity and the discussions were all-inclusive. That's good and that's different.

Are We Really Keeping Score?

Every team knows you have to keep score.  Every business knows you have to keep score.

Ask the head of any ALS not-for-profit how last year went.  The answer will typically be financial. "We had a record fundraising year."  "It was a tough economy but we did fine by cutting expenses."   "We are thrilled with $3 million in new government grants."

After the financials, some other statistics may or may not follow.  "We screened 40 therapy candidates in the lab.  Two have 'promise.'"  "Fifty research grants were made."  "We held 4,211 support group meetings helping 12,200 patients." "Twenty-two dead mice eliminated some duds from the research pipeline." "We had ten mentions in national media."  "We helped pass one piece of legislation."  "1,214 new people self-enrolled in the ALS Registry."

Nobody says, "Over 125,000 died again from ALS."

Are we keeping the right numbers on the scoreboard?

Are we demanding the right statistics during the game?

Dear Smart ALS Scientists Who Are Meeting In New Orleans This Week

We need a shared, searchable, online source of ALS-related grant information that includes grantors, $, start dates, end dates, receiving institutions, investigators, topics, and outcomes.

Something like this but with more of the pertinent details like amounts and outcomes.  

That would really jazz your donor base.  It would help people searching for hope to have a real place to search.

It's our portfolio, yet nobody tells us exactly what's in it and how it's doing.

p.s. The search tool needs to be shared because we're tired of funding expensive, redundant, incomplete  silos of data like we have bought for clinical trial information.

Let's Have A Pact

Here is a press release from yesterday --

http://online.wsj.com/article/PR-CO-20130621-906271.html?mod=wsj_share_twitter

The ALS Association is working to change that and has committed more than $67 million to find effective treatments and a cure. 

Wow, is that $67 million last year or over the last 30 years?  Does "committed" mean your direct expenditures?  That's a huge chunk of money.

Here's a past statement from the MDA --

MDA (mda.org) is the world’s leading nongovernmental provider of ALS services and funder of ALS research. Over the years, MDA has led the fight against ALS, investing more than $307 million in its ALS research, services and information programs.

Double-wow, is that $307 million over the last 70 years or the last 7 years?  How much scientific research is buried in that number.

And this is from als.net, the website of ALSTDI, a smaller, all-research organization --

12 M spent on research a year

That's a good wow because that is totally research and an annual number.  But how much of that came from the MDA?  Are we double-counting dollars?

One's impression is that ALS research is tremendously well funded.  The fact is that it's not.  Our ALS organizations, in an attempt to impress potential donors with their commitments, give the world a distorted view of the low research funding levels that have held back the fight against ALS.

So, how about a pact, ALS organizations?  It would be good for all.  Really.

Here's the pact:

Every year use a common format and share with the world --

• The dollars you spent directly on ALS research in the last calendar year.
• Any dollars that you received from other ALS 501c3s that were also counted in their statements.

That's it.  Simple.  No glitz. No spin. It gives your donors and the world a normalized view of the good research work you do and the tremendous need for more resources in the fight.  Please enter a pact.  We need a strong handshake and no arm-wrestling.  C'mon.  You can do this.

Time To Raise The Lid And Smell The Cooking?

[If you've not read the June 15 post, please give it a quick scan for some background first.]

The national ALS registry concept was an easy case to make.  Take a look at www.alscounts.com if you're not familiar with the need and the history.

We fight hard every year for taxpayer dollars that will let the CDC's Agency for Toxic Substances & Disease Registry (ATSDR) develop its ALS Registry well.  You'll not find ALS advocates getting stingy over such an important project.  They go to great personal expense to get ATSDR what ALSA says it needs.

Here's the recipe.

• ALS advocates get ALSA's legislative priorities in the first quarter of every year.  Those legislative priorities include continuing funding for ATSDR for the ALS Registry.  ALSA presents us with the number.  This year and last, the requested number was $10 million per year.
• ALSA has an advocacy fly-in during the first quarter of the year for invited advocates and ALSA employees to promote the priorities with legislators.
• In May all advocates who are able to make the trip and pay the fees and travel expenses are invited to a bigger Advocacy Day to call on legislators.  Many ALSA employees also make the trip at the expense of their donors as part of their jobs.  Some people with ALS may be assisted by their chapters' benefactors or by other not-for-profits to help with travel expenses.  This year, under the guidance of ALSA, we advocates asked legislators for another $10 million for ATSDR to continue the ALS Registry project.  Here's a recent ALSA pitch.  
• Annually there is an invitation-only meeting of a committee that gives input to ATSDR on the Registry project.  The public is not informed of the meeting in advance.  The minutes of the meeting come out long after the meeting, and the minutes reflect a group very happy with the project.  There is little critical discussion.  Nobody's feet are held to any fires.  Expenses are not reviewed.  You can see for yourself here.  The list of 2012 participants is at the end of the document.  You'll see that ALSA, MDA, and the CDC and ATSDR and its contractors are very well represented.  There is only one ALS patient on the list of whom I'm aware, and he died shortly after the meeting.

That's it.  We sing for ATSDR's supper every year and we work hard so that they have the generous funding that they and ALSA say they need.

I was flabbergasted when I found this the other day at usaspending.gov.

Then when I downloaded the data, I became even more concerned.

Has ALSA been the recipient of large, no-bid, noncompetitive contracts out of the generous funds they had us request for ATSDR?

Was this ever mentioned to us -- the advocates who pitched hard for them for their suggested funding level for the Registry?

Has the ALSA-ATSDR relationship become too cozy?

This at best smells bad.

"And Other Matters As Recommended By The Advisory Committee"

Here is the text of the ALS Registry Act -- http://www.govtrack.us/congress/bills/110/s1382/text .

I am one of many who worked long and hard to get this enacted and funded.  It seems essential to me that we have an excellent epidemiological inventory of cases of ALS so that scientists can better understand the disease.  Over decades we had buried the clues along with thousands of people with ALS.

Our government is good at census work.  It knows how to count noses.  One excellent disease registry is hundreds of times more valuable than a dozen independent, less complete registries.  Add the fact that most people with ALS go quickly into various government databases such as Medicare and Medicaid, for the U.S. government to be the chief nose-counter for people with ALS made so much sense.

It took years to get this passed.  People with ALS and their families were willing and able to fight for funding at a "Cadillac" (a word used by a man with ALS at an advocacy meeting) level so that the CDC could do the job right.  When the ALS Registry Act passed, the CDC even said that it was a well-funded project.  Hindsight is 20-20, but would a lean project have been better?

Here's the most recent pitch -- http://library.constantcontact.com/download/get/file/1113068431369-11/2013+ALS+Advocacy+Day+Talking+Points.pdf

Here is the melange we think we got for our $33,000,000 so far.  We think.

The Basic Data Surveillance
Data availability time lags and some kind of secrecy purported to be required by OMB keep us from knowing exactly what the government files indicate about incidence and prevalence of ALS, but we hope that something is reported later this year, $xx million dollars later.

The Patient Self-Enrollment Portal
This was added to the project to provide people with ALS a way to step up and make sure that they are counted.  The portal is there.  Where are the patients?  What is the uptake on self-registration? What percentage of the cases detected by passive surveillance also self-enroll?  What is the communication process to insure that patients are aware of and understand the value of self-enrollment?  Whose feet are held to the fire to insure that patient self-enrollment happens?  So many questions, so little accountability.  This isn't a "build it and they will come" proposition.  

Last year a man with ALS delivered this information to the advisory group -  https://docs.google.com/file/d/0B5nmEImgaRfudXc4ay1zUGNQa28/preview?pli=1  Has anything changed? He died. It's up to the rest of us to ask for some accountability.  If the same survey were administered today, would anything be better?

And what in the world are the details of this contract? https://www.fbo.gov/index?s=opportunity&mode=form&id=31776989bc48abbd46ddbe5dd2231b41&tab=core&tabmode=list&= 

The Risk-Factor Surveys
The self-enrollment portal could also provide a route for continuing engagement from willing patients to respond to risk-factor surveys.  That seemed like such a good idea to add onto the basic Registry, too.  So far we have learned that smoking is a risk-factor for ALS.  Does that advance the science?  Do patients even know about these surveys?  Do neurologists?  New surveys are awaiting review by OMB.  What is OMB looking for? We even learned in May that the CDC will use budget money left over to pay scientists to suggest new risk-factor surveys. Would a few of the smart scientists on the Advisory Committee not be able to rattle off risk-factor topics that would be as good as any paid government contractor? Why do more surveys if the uptake on the current surveys isn't good?  What is the communication process on these? 

The Booth and the The Tchotchkes
Shortly after Registry launch, we saw a big trade-show booth that would be shipped to various advocacy and neurology meetings (along with sponge baseballs). Are the booth workers trained to be on their feet and engaging with a five-second message that will stick?  What's the goal?  How does this fit into a larger communication plan that will have measurable results?  

The Registry Medallion for Websites
Great idea, but whose job was it to contact websites to ask them to add the medallions?  It seems that a few rogue people with ALS and advocates contacted many ALS-related websites that were glad to add the medallions and had not been asked to do so by the CDC or by ALSA or by the MDA.  Ah, communications.

The Website www.cdc.gov/als  
It is actually less cluttered than it was a year ago, but the calls to action to patients are still not clear.  As one advocate said, "It looks like a website designed by a government contractor."

The Clinic Locator
Why, oh why not just put links to organizations and agencies that maintain their own resource databases?  Why add a search mechanism that will require constant data maintenance?  Oh, and if you're curious, try zip code 46556, a zip in Indiana that is near the Michigan border and Chicago.  It's a great test zip code to see if resources in Indiana, Michigan, or Chicago show up.  Pffft.  Of course, if you use an iPad you'll not realize this since it doesn't work at all for you.  This service locator was unnecessary and is not particularly good and will require continuing data maintenance.  Cha-ching.

The Continuing Medical Education Modules
We certainly need more ALS education among healthcare professionals, but was this the right place to deliver it?  And again, what is the communication process to engage those who would benefit from this training?  Are we engaging healthcare professionals who need to learn about ALS, or are we providing CME to people who already work with ALS?  Just because the CDC had the ample budget to let them deliver these doesn't mean that it was the best organization to do so.  Are we slipping into the mode of having the CDC handle whatever projects our ALS organizations can toss their way?

The Video Tutorials on The Registry
How about fixing the underlying usability issues rather than adding expensive layers of tools to help people fight through the usability issues?  Would you ever buy a book at Amazon if you felt that you needed a video to show you how?

The Android Tablets
Tablets were supplied for ALSA clinics to assist PALS in self-enrollment.  Is there a process to insure that they are used appropriately?  Are there measures to see how well the process is working?   Did we throw money at a problem again without understanding its roots?

ALS Research Notification
Here's the scoop on this new Registry accessory -- http://wwwn.cdc.gov/ALS/ALSClinicalResearch.aspx

Again, just because you have the budget to do something doesn't mean you're the best person to do it.  Doesn't clinicaltrials.gov have better, more comprehensive information than the CDC is building separately here?  Do we need yet another database and administrative process?  is clinicaltrials.gov not working on gui enhancements as we speak? Are we not building another data resource that is duplicative with existing resources and that will require ongoing maintenance?  And is a poor precedent being established in leading people with ALS to believe that they will be informed when pertinent research opportunities are available?  Rather, they may be informed when some research opportunities are available.  They are still responsible to seek and find the others.

The Biorepository Feasibility Study
My a-ha moment was when a gentleman with ALS said, "I feel like I've left tissue all over the country."  Surely tissue samples are critical for scientists to understand ALS.  Will the huge biorepository project being proposed by the CDC (as another accessory to the basic Registry) fix the problem of a patient's tissue being left all over the country?  Is anyone thinking about having the Registry have the master directory of bio-samples of people with ALS so that tissue stored in any number of existing repositories could be indexed and not duplicated by the CDC's respository?  The government is good at tying together information about our bank accounts.  What if the CDC built something to pull biorepositories together rather than form yet another silo of ALS tissue and information?  At the recent ALS advocacy conference, we learned that the CDC was learning from the experiences existing biorepositories, but nobody said that the CDC would be working with existing biorepositories to prevent expensive duplication of efforts and tissue and data.  Patient #50239483226's brain is in a biorepository in Chicago, his blood/sweat/tears are in a refrigerator at the VA, and his son's blood is at the NIH.  Is anybody thinking along these lines, or will the CDC just build a bigger silo in our growing countryside of biorepositories?

The Burden-of-the-Disease Project

Again, this is a topic in dire need of quantification.  Biogen Idec undertook a similar project recently.  Again, is the CDC's Registry the best place to deliver it?
https://www.fbo.gov/index?s=opportunity&mode=form&id=beed7389158dc8cd169e14321a807591&tab=core&_cview=0 

If only we had confidence that the basic counting of noses of those with ALS was being done accurately and completely.  If only we had confidence that all of the extras were contributing to the core mission of the Registry and not distracting from it.  If only we had some measurable results to tell us.

We hope for timely minutes of the next meeting of the Advisory Committee and we hope that these experts see the value of sticking to one's knitting. We hope some advisors will challenge the scope creep.  Nobody gives a government agency a prize for not spending all of its budget, but maybe we should.

We Need To Remember These Huge, Gaping Holes Left By ALS

A few months ago when a man with ALS who posted online using the name "Persevering" died, Emma, the forum administrator at www.patientslikeme.com wrote, "... a huge, gaping, Persevering-shaped hole is left."

That said it.

In the past year, we have so many huge, gaping, specially shaped holes left as ALS has stolen some very special people from us.

We love to see the stories of courage of those living with ALS, but those don't really remind us of all of those huge, gaping holes.  We need to remember.  We need to find ways to count the holes and not just the few who are allowed to live amidst us with ALS for such a short period of time.

God be with all who have huge, gaping holes in their lives.  God be with all dealing with ALS and with those searching for a treatment.  God be with us all because those huge, gaping, specially shaped holes that ALS leaves are a loss to every one of us.

Our gaping holes don't fill in like the waters in a wake, nor should they.

The Ultimate Sacrifice That Keeps On Giving

Today we remember and honor those who gave their lives to keep our nation safe.

The thousands of cemetery flags speak volumes.

There are thousands of other veterans whom we must not forget.  They are making their ultimate sacrifice after their combat days have been completed.  They are dealing with an after-effect of military service -- ALS.  It's a difficult path to death.  It can devastate a family that has already given way more than its share to our nation.

The ALS-military connection isn't some fringe theory like those we hear about cell phones or things they put in our city water.  It's a scientific fact, shown in repeated studies.  The reason for this correlation between military service and ALS is still a mystery.

This is a message that we have failed to deliver well.  It should outrage and concern every American.

Thanks for paying attention and spreading the information.  There are thousands making their ultimate sacrifices long after the wars.

We owe them excellent care.  We owe them an explanation.  So far, we have delivered neither.

Are You Reading This On The Bad Internet Or On The Good Internet?

Yesterday at the ALS Association's Advocacy Conference, Dr. Richard Bedlack presented on "ALS Facts and Myths."  I think highly of Dr. B.  He is bright, knowledgeable, accessible, energetic, creative, and pleasant -- a rare package of traits in a neurologist in my experience.  He also provides a valuable source of information for those dealing with ALS with his ALS Untangled project, which, by the way, is available on the internet at www.alsuntangled.com .

During the webstream of his presentation, we heard Dr. B cover some "alternative" therapies that people with ALS might encounter, and he spoke of the scientific fact and (mostly) myth associated with them.  Most were found on the internet.  Many were so laughable that they drew lots of loud snickers from the audience.  Oh, that internet is so bad.

The continual laughing at the internet from the audience seemed odd to me.  Many (if not most) of those people in the audience were staff or fundraisers for our largest ALS organization that has used the internet to fuel a huge fundraising success.  The guffaws came from an audience that included paid tweeters using social media to promote the ALSA advocacy conference experience.  And there were contractors webstreaming that very session. Oh, that internet is good.

Internet tools are powerful.  With any medium, content can be dependable or not.  The internet provides us unprecedented opportunities for experts and organizations to help curate and contribute content.  The internet is the most accessible milieu for people with ALS and their caregivers.

The internet isn't the problem.  If you laughed a whole lot and rolled your eyes when Dr. B spoke of the internet, then perhaps your lack of online engagement beyond fundraising and organizational promotion is the problem.

Some Thoughts From ALS Advocacy Day on Capitol Hill

We met absolutely no resistence to the ALSA priority requests for $10 million to continue the CDC's ALS Registry and for $10 million for the DOD ALS Research Program.  None. Nada.  Not even from those who are strong fiscal conservatives.  The "ask" was easy.

Moving to metaphors...

When the exercises are easy, it's time to add some weights.

And if you're old enough to remember the great Fuller Brush sales case, you'll know that there was always another brush in there to pull out and sell as long as the customer wasn't saying no.

Some Impressions From Day One of the ALSA Advocacy Conference in Washington, DC

The live streaming of the proceedings is a wonderful addition.  Quality was good and it is bringing in many people, including those with ALS and caregivers who can't travel.

I listened with interest to the live stream of the session on the Registry.  Dr. Horton did a lot of background explanation and even started by stating that some people may know nothing of the Registry.  That's not good.  They know now. At least this group knows now.

Statistics still weren't revealed except that a little over half of the self-enrollees took the first risk-factor survey.

Further risk-factor surveys have been developed but are awaiting OMB approval.  What the OMB is looking for in their approval process wasn't explained.

It was clear from one of the questioners that the whole concept of the risk-factor surveys is not clear to the people who need to engage in them.

The scope-creep of this project is concerning to me.  Yesterday we heard about clinical trial matching services and a cost-of-ALS study and all kinds of new things that can be done with the extra funds that are not needed for the core registry.  Enough, already.  There are a lot of information-based projects that are needed in the fight against ALS, but just because ATSDR has the funds doesn't mean that it is the best organization to deliver them.  Have we overfunded a registry project that can now take on all kinds of peripheral projects?  Oh, that we had kept the registry project simple and lean and mean!

Our mothers would say to finish your peas before you put anything else on your plate.

I arrived at the live meeting late and for a short period.  It was nice to see the old "Strike Out ALS" stickers on the JW Marriott staff again. The crowd in the meeting room was huge.  I was amazed at how jam-packed it was.  Unfortunately most of the faces in this crowd change every year.  And next year...

Other commitments kept me from seeing the live stream of the dinner last evening, but I enjoyed the tweets and am so glad that O.J. Brigance and Steve Gleason helped set the tone to emphasize the power and the responsibility that we all own in the fight to beat this beast of a disease.

More to follow today on Capitol Hill.  On the morning news we learned that Prince Harry will be on Capitol Hill today, too.  We will not have succeeded until there is a picture of Prince Harry wearing a "Strike Out ALS" sticker!

Recidivism Isn't Always Bad

We read how some people just keep going back to jail, year after year, crime after crime.  That's bad.

Oh, that people would keep coming back to the fight against ALS year after year!

Annually there are ALS advocacy activities in Washington, DC, in May.  Every year the repeat faces are those of employees in the fight against ALS and board members who are vested in ALS organizations.

The faces of the people with ALS who manage a trip to Washington seldom repeat.  The disease itself makes them short-timers.

The faces of the caregivers and families who manage a trip to Washington also seldom repeat.  That's a concern.  After a person with ALS dies, those are exactly the people who can advocate relentlessly with a special kind of rage.  They have the benefit of longer memories and know where the fight has failed and needs change.

Why do we lose them?  Why do they leave the front lines of the fight?  Does it have something to do with their longer memories and rage and challenges to the status quo?

Perhaps the registration form holds a big clue.

"Other?"  Clearly not a core constituency.