ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Monday, May 27, 2013

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.

Saturday, May 11, 2013

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.

Friday, May 10, 2013

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.

Thursday, May 9, 2013

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!

Wednesday, May 1, 2013

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.