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.

This Was ALS Awareness

From May, 2011, there were three days of display of the Piece by Piece exhibit in three very visible venues in Washington, DC --

This was grass-roots, volunteer driven (literally) and there has not been anything like it in our nation's capital for ALS awareness since.

RT to Defeat ALS

In case you had not seen Steve Gleason at the NFL draft, here he is --

http://deadspin.com/steve-gleason-announced-the-saints-third-round-pick-483478798?utm_campaign=socialflow_deadspin_twitter&utm_source=deadspin_twitter&utm_medium=socialflow

Pretty good, eh?  Important image of sports fans everywhere to see of ALS, eh?

This morning on twitter, I simply asked five sports journalists with huge followings to retweet the link with the coverage of Steve.  Within an hour, that link had been retweeted to 100,000 people who follow those sports journalists.  My wild guess is that the majority of those who got the tweet hang onto the words of sports journalists they follow and are not very familiar with ALS.

Bingo.  That's how ALS awareness happens in 2013.

For May, ALS Awareness Month in the U.S., perhaps all tweeps can work hard at getting the big RT. We're only a few retweets away from millions of people who are ALS-clueless.

These Are My Questions Du Jour On The MODDERN Cures Act

I may just be dense, but I'm having trouble understanding how the patent part of this works.  I've tweeted pleas, and @modernmeds was kind enough to respond, but I think I need more than 140 characters to ask my questions.

Here is some material from the National Health Council, whence this proposed legislation comes --

http://rareadvocates.org/wp-content/uploads/2012/10/MODDERN-Cures-Overview-2-7-12-2.pdf

It includes a lot of features, but I sense that the patent protection is the most pertinent for ALS today.

Here are the descriptions of the patent aspects --

TITLE II — CAPTURING LOST OPPORTUNITIES FOR PATIENTS


Sec. 201 – DESIGNATION OF DORMANT THERAPIES

This section creates a new class of drugs, named “dormant therapies.” A dormant therapy is a new drug or biological product that has insufficient patent protection and meets the FDA definition of “unmet medical need.” The Secretary is required to establish a methodology and criteria for this designation. In its request for designation as a dormant therapy, the manufacturer must provide a list of all patents and applications for patents to which the manufacturer has rights, and must agree to waive those rights in order to receive the designation.

Sec. 202 – PROMOTING THE DEVELOPMENT OF DORMANT THERAPIES

This section provides for a 15-year period of data exclusivity after FDA approval to encourage the development of dormant therapies. The Secretary is required to make its determinations available to the public. This bill will establish a predictable pathway for introducing low-cost generic equivalents to dormant therapies.

Some examples would really help me understand.

1. What if there is a drug that is within a year of losing its patent and the manufacturer holding the patent decides to pursue testing of that drug for ALS?  It will take years to test the drug for ALS.  What happens?  What does it mean to waive the old patent rights?  What does the 15-year period of "data exclusivity" mean?

2. What if there is a drug that is within a year of losing its patent and another manufacturer is interested in pursuing it for ALS?  How would that work?

3. What if there is an old drug whose patent protection has long since passed.  Can it get new patent protection with this?

Thanks to anyone with insights. 

Thank You, Chicago

Special thanks to @irishoconnor and @bio1x1 for the tweets that showed us this marvelous picture from Chicago last night.  As the scientists and business interests from #BIO2013 sought dinner and their evening's entertainment, they that got a big reminder of what's really important.

Please Mark Your Calendars And Help Spread The Word

The fourth annual Worldwide Weekend of Prayer for Those Dealing with ALS is coming up May 10-12, 2013.

Please visit http://www.wehaveaprayer.org and help spread the word to anyone who might like to join in.

Thank you.

A Month Is A Terrible Thing To Waste

In a few days it will be May -- ALS Awareness Month in the United States.

How many people who are clueless (or even semi-clueless) about ALS today will be aware of ALS by the end of May.

Don't count those 500+ Americans along with their families and co-workers and friends and neighbors who are going to find out the hard way with an ALS diagnosis.

How many?

Don't You Wish You Could Have Been There?

Click here for the background materials for ALSA's Advocacy Conference and the day on Capitol Hill.

Their public policy priorities are again --

• Appropriate $10,000,000 to continue the National ALS Registry at the CDC
• Appropriate $10,000,000 to continue the ALS Research Program at the DOD
• Enact the National Health Council's MODDERN Cures Act

Don't you wish you could have been there when they brainstormed, challenged, evaluated, analyzed, measured, questioned, disagreed, innovated, calculated, dreamed, disrupted, listened, questioned more, argued, and finally fleshed these out as the best 2013 legislative priorities possible for people with ALS?

ALS Is A Crime

What if on Thursday, May 9, every person with ALS donned a little crime scene tape?  It makes an inexpensive belt, tie, scarf, headband, or accoutrement to a wheelchair or cane.  Ah, wheelchair streamers!

Everyone who would see the tape would ask, "What's with the crime scene tape?"  The conversation about ALS begins.

On that day dozens of people with ALS will invade Capitol Hill to talk with legislators.  Wouldn't the crime scene tape be an interesting visual in those hallowed halls?  And think of the photo ops.

And what if people with ALS everywhere donned a few strands of the tape and were seen wherever they might be that day?  Oh, and some digital pics of people with ALS, famous or not, could invade the social media.  Viral?

ALS is a crime against people and their loved ones.  Crime scene tape is inexpensive.  Anyone up for some ALS awareness?

Time To Ditch The Blinders And See Whom We've Left At The Side Of The Road

It's always easier to get a large group moving in a common direction if you try to keep them focused on one goal.  Cut the distractions.  Beam in on a clear deliverable. Deliver.

Over the years an annual legislative priority for ALSA's Advocacy Conference has been to provide funding for the DOD ALS Research Program.  The case is built on the fact that those who have served in the military are much more likely to be diagnosed with ALS than the rest of us.  The science is still a mystery.  The solution is a mystery.  Research funding will help solve those mysteries, and we owe that to those who give so much to keep us all safe.

Focus. No distractions. Make the case. Deliver.  But while we're making the case for those long-term research goals, can't we slip off the blinders for a few minutes and see the near-term problems that our veterans with ALS face every day today?

Take a look -- http://scjohnson63.tumblr.com/

Many of us are clueless about the VA healthcare delivery system and rules.  Add to that the complicated and difficult disease that ALS is every day.  What we see when we slip off those blinders and peek at the here-and-now is not as easy as asking for research funds.  It involves an arcane healthcare system and a disease that presents unbelievable challenges for patients and caregivers, many of whom are spouses and children.  Those challenges change rapidly, and the word "rapidly" isn't used in many sentences that also contain "VA."

Our overall sense of national outrage about VA waits rose last week.  We should also be willing to take off those blinders and look at our ALS veterans in the eye.  If we step up for them with a fraction of the effort that they gave for us, this can't be a difficult set of problems to solve.  But first we have to look.  Then we need  to work.  No show-horses needed.  This is work-horse time.

Mittens and Duct Tape To Defeat ALS?

This morning I saw a tweet from a woman with ALS --

@buffandblue697h If u want to understand my life , put on thick mittens then dress, eat, and type. ALS sucks!

Several weeks ago there was a posting by a man with ALS on the patientslikeme forum --

As I was fighting an itchy nose last night I had an idea how to let unaffected people have a glimpse of what life with this disease is like.  Today I challenged my facebook friends to go for two hours without touching their face or head.  Not to scratch their nose or move the hair out of their face.  So far the shortest time is fifteen minutes and the longest is 39 minutes.

Perhaps at a big ALS event, the healthy ALS advocates can volunteer to duct tape themselves with constrictions that are small outward reminders of what ALS steals from people.  Arms strapped down or a mouth covered or feet taped into an awkward position or immobilized fingers would represent a small fraction of the reality of ALS.

How would it be if people calling on legislators in Capitol Hill in May wore their duct-tape limiters... and then handed the legislative assistants, Members of Congress, or Senators some nice big mittens to wear during their meetings?  Oh, and no scratching of any itches allowed.

A stunt?  Yes.  Would it be remembered?  Absolutely!

Can We Lead With A New Meeting Standard?

Over the years we've grown accustomed to ALS meetings that feature expert speakers, a very short question-and-answer period at the end of each presentation, verbal questions from the live audience, and never enough time to address all of the questions adequately.  That is followed by the small mob that surrounds the speaker at the break where lots more questions are asked, and we assume, answered.

We can do better.

• Every question deserves to be asked and heard by all stakeholders.
• Every question deserves to be answered and heard by all stakeholders
• Every speaker deserves adequate time and resources to answer those questions.

For a disease where there are lots of questions, accessibility and speech are problems, and time is of the essence, we can certainly be a little more creative about insuring that every question is asked, answered well, and heard by all would would benefit from the information.  And surely we can archive those questions and answers to be a valuable resource for all of those involuntarily recruited by ALS before the next meeting.

When agendas are published, questions can be solicited in advance.  After a presentation, questions can also be accepted with a promise that they will be answered in a public space.  Speakers can understand that this is an important part of their engagements.

Every person with a stake in the fight against ALS has the right to ask good Qs.

Every Q deserves a good A.

Everyone will benefit.

Please Don't Lose Our Most Valuable Resource Against ALS

Over and over and over, year after year, decade after decade, ALS has become a deja-vu disease.  People with ALS try things.  People with ALS experience things.  People with ALS have theories about possible triggers to their condition.  When these people with ALS die, many of the clues that their lives and experiences harbor are buried with them.  We waste our most valuable resource in the fight against ALS -- information.

There are important ways that people with ALS can contribute their information for those who follow.

1. The National ALS Registry administered by the CDC has a self-enrollment portal that will insure that a person with ALS's basic epidemiological data are captured.  There are also periodic risk-factor surveys that will address some of those possible triggers.  Please encourage those with ALS to participate at www.cdc.gov/als .

2. Every person with ALS tries things.  Some of those things are simple like a special diet or vitamins.  Some of those things are exotic treatments.  Regardless of what those things are, it is a terrible waste not to capture some basic data around the things tried and the results (or lack thereof) that the patient experienced.  A convenient place for tracking such things so that others may learn is in the patient profile area at www.patientslikeme.com .  The website provides an orderly framework for storing and searching for data.

Information lost in the fight against ALS makes it the disease where new patients constantly have to re-invent wheels.  Information lost also means that scientists often ignore some of the simple things that past patients have found helpful.  This is a dreadful waste.

If you are a patient, please don't let your data go to waste.

If you are in a position to influence or help patients, please step up.

Thank you.

Which Campfire Will Defeat ALS?

Some people build a campfire as a nice place to sit around and sing "Kumbaya."

Other people build a campfire to provide light and heat.

This Is Almost As Good As A T-Shirt

Well, maybe not as good as a t-shirt, but it's not bad.

Last year for ALS Advocacy Day I had some nice buttons made up for PALS who had self-enrolled in the CDCs National ALS Registry or who were in clinical trials (or both!).  The idea was for them to let their peers and others know of the good deeds they had done.  This encourages others to participate and starts some good conversations.  It was nice to see so many wearing them when we went to Capitol Hill.  They are large and readable buttons.

I still have some buttons left and would love for them to find PALS who will wear them proudly.  I would also love for them to find PALS and support group leaders who will help spread them to other PALS and will help spread the word on the importance of Registry self-enrollment and in clinical trial participation. 

All I ask in return is that they be put to work and worn by those in the Registry or a trial.  If anyone would send me some pictures of PALS wearing them, you can be assured that they'll be posted.

Please send a snail mail address and how many Registry buttons and how many clinical trial buttons you need to alsadvocacy at gmail dot com.  You can be assured that your address will be deleted after the buttons are sent.  I'm just an individual trying to spread Registry and clinical trial awareness.

While supplies last.  Please help put these to good use!  If I win the lottery, there will be t-shirts ;-)

Thanks, all.