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.

Saturday, November 16, 2013

My Fifteen Minutes Are Up

Lately there has been an abundance of platitudes about and for caregivers as November is National Caregivers’ Month.  There are days when it seems to have that aura of a Hallmark holiday.   I can envision ALS caregivers wanting to scream.  Telling ALS caregivers to be good to themselves and to make time for themselves usually comes from people who have little ALS caregiving experience.  It’s a nasty, demanding disease, and to add to the physical exhaustion, caregivers are sucked into a uncontrollable catastrophe where a loved one is slipping away.

So instead of suggestions of support groups and massages and special time to oneself, we would all do better to drop off a dinner (everything… not just a main course) or rake the leaves or run some errands or clean the gutters for a caregiver.

And I will pass along  one thing that was so helpful to our family in dealing with ALS.  We learned it from another family that had been dealt some pretty crummy cards in life.  They had a 15-minute rule.  You get 15 minutes of self-pity every day.  When your 15 minutes are up, you have to move on and deal with life. 

I can’t tell you how many times we had to remind one another that our 15 minutes were up.  We smiled and moved on.  The 15-minute rule was a caregiver’s best friend.

May God be with all who are caregiving and dealing with ALS, both this month, and every month.

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.


Tuesday, November 5, 2013

Let's Go For Some First Downs

In the big meetings of 2013 when we heard talk of winning the game with transformative game plans.  We heard of lots of hope for scoring against ALS.  We heard a lot, yet little was delivered.

Let's play some small-ball and go for some first downs before the end of the year.  We can advance the ball in some very realistic ways.

1. Let's put heads together and come up with a searchable inventory of research projects.  Let's treat ALS research like an investment portfolio that everyone should want to understand and, therefore, support.

2. Let's put heads together and share a calendar of activities pertinent to ALS.  One calendar would help everyone be aware of events and conferences.  One calendar would help organizations in scheduling.

Those are pretty simple plays.

We'll never win the game if we're not able to move the ball just 10 yards.




Saturday, November 2, 2013

Some Of The Most Powerful Ideas Are So Simple


http://www.gocomics.com/peanuts/2013/11/02#.UnTZ5xzxZ9R


Peanuts by Charles Schulz
Gocomics.com
November 2, 2013

Every family dealing with ALS today is hanging hopes on something.  Every organization funding ALS research is promoting its hopeful work.  All place their bets the best way they can today and believe and hope.

For decades ALS has outsmarted hopes and dreams.  ALS is a cunning enemy.  When things families and organizations hope for don't happen, people die and families and organizations move on.

Whoops!  What's to keep the next "generation" of people dealing with ALS from pinning their hopes on a concept that already failed?  What's to help people investing in organizations' hopes from placing some very bad bets?

It's difficult for people and organizations to admit that they have failed, especially when optimism drives fundraising success.  Everybody loves a winner.  

We need to be honest that we have all failed, both individually and collectively, to find an effective treatment for ALS.  It's that simple.

And to make some good come out of those failed hopes, let's start keeping some records of what didn't work.  Please!  Let's build on the information of the past rather than continuing to recycle hope. 

It's time for a good, searchable database of ALS research investments and outcomes.  We need to learn to admit when we were wrong and to build on that knowledge.  We need to expect some refreshing honesty and accountability from organizations, and we donors need to support organizations that are big enough to document what has failed.

Roy hit the nail on the head in this morning's newspaper.