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.

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!

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