Tuesday, March 29, 2011

The ALS Treatment Tourney Makes The World's Smallest Set Of Bracket Choices

How are your men's NCAA hoops bracket picks doing? Did you pick with your heart rather than your head? Are you questioning the original seeds? Are you looking up data on VCU now that they've become the hottest team in the tourney.

With a few google searches, you can find data on every team in the NCAA hoops tourney in exquisite detail. You can make informed choices. You can override your data sense and pick with your heart if you like, but you can swim in data if you like.

People with ALS don't have data to help make informed treatment choices. Shoot, they don't have enough treatment options to give them even a two-round bracket.

What is wrong with this picture?

Wednesday, March 23, 2011

The Fight Against ALS Needs A Guiding Star

An activist, not merely a celebrity spokesperson...

Friday, March 18, 2011

We Grasp At The Same Straws - Over 70 Years Later

A Reuters story on the potential use if Vitamin E in ALS was published yesterday.

Google "Vitamin E ALS Eleanor Gehrig."

We grasp at the same straws over seventy years later. What is wrong with this picture?

Sunday, March 6, 2011

We Need Some "I Was Fine As-Of..." Nametags!

For advocacy day on Capitol Hill, wouldn't it be interesting for those many people with ALS to have some nice big badges with their "I was fine" dates. That would get the attention of those healthy young staff members who listen to our case for increased research funding! It might make them squirm, and that's good.

Most people with ALS were golfing or sailing or shooting hoops or playing catch with the kids not so long ago. ALS strikes with a nasty punch, and vibrant people end up in wheelchairs or with android voices speaking for them in a matter of a few months.

Maybe that "I was fine" date would make some interesting impressions on some vibrant people who can make a difference in research funding.

Lord, What's A Cubit?

The world likes to measure the "problem" of a disease in the number of patients affected today. We need to learn to tell the story better -- that the "problem" is actually the way we are measuring the ALS problem.

We used to measure boats in cubits and shoe size with machines that dumped xrays in our feet. It is not unprecedented to change the paradigm for measuring something.

So... how do we quantify the real problem when we seek attention and resources for ALS? What's the pertinent measure?

  • I would love to have a "wow" visual to show the problem of pouring a large incidence into a small prevalence.
  • Is there some kind of incidence::prevalence ratio that makes the ALS pop up as a more critical problem than other diseases (that are nonetheless difficult but not as quickly fatal)?
  • One good thing that I can see coming from a reduced perception of prevalence is that asking for quicker SSDI benefits or better homecare coverage or continuing veterans' benefits should not be as difficult since the cost would be perceived as smaller. Perhaps we can actually leverage that "it doesn't affect many people" perception and step up the benefits available to those dealing with the beast.
  • The case for research is a tough one unless we can produce numbers that show the market value of expanding that prevalence number. That number would grow and grow with some life-extending therapies.

I hope that we can use our heads to explain the problem better to the public and to our government. We all know that ALS is a problem... but the old measures will make it continue to live in the shadows. Urgency is not stressed by fixating on how many people are alive with ALS today. There are not enough who are permitted to stay alive today. That's the problem!

Saturday, March 5, 2011

Every Day Hundreds Of People Have Michael's Reaction

Every day. Over and over and over. Every day. Fathers and grandfathers and mothers and grandmothers are diagnosed and everyone has the same thoughts. When will we stop this continuous, outrageous madness?

"He says: 'I've got a real rare disease called Lou Gehrig's disease,'" Michael recalled. "I had heard of it, but I had never understood it. Immediately, my mind jumps to what does that mean? My mom (Lee Ann) had colon cancer, and she survived that, so I'm like, 'What kind of treatments do they have or what kind of rehabilitations can they give you?' He's like, 'Well, it's a disease where there is no cure for it ... and there is nothing that I can do.'

Read more: http://www.kentucky.com/2011/03/04/1657338/fathers-death-gives-former-tates.html#ixzz1Fjb4d45H