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.

Wednesday, November 6, 2013

Travel To Defeat ALS?

In the last year the whole concept of travel in the fight against ALS keeps popping up in different ways.

  • One 501c3's IRS Form 990 shows that a huge proportion if its investment in the fight against ALS is spent on travel... to some pretty nice spots.
  • At big ALS meetings, a large percentage of the attendees are often employees of our not-for-profits or our government.  They are on the meter with their travel expenses paid.
  • At ALS conference during the government shutdown, a government-employee panelist did not show.  Did the sense of commitment stop when the expense account was turned off?
  • The July Team Gleason Summit in New Orleans had a large number of ALS scientists and not-for-profit employees whose expenses were paid by Team Gleason.  Would they have engaged if they had to buy their own tickets and hotel rooms?  Would they have been willing to go to Fargo?
  • I often wonder if some people who make good livings and blather about their commitments to the fight against ALS would really show up on their own dimes.  It's business to them.

As businesses get more savvy about confining reimbursed travel to trips that will make a tangible difference, have our not-for-profits become more sloppy?

And at the end of every ALS meeting, before adjournment, let's start to require a commitment to some action item that will make a tangible improvement in the fight against ALS within 30 days.  If you can't do that, maybe you should get a bill for your travel expenses.


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