Sunday, April 22, 2012

Q and Plop

Sleepy asks a lot of questions.  It's genetic.  They are not meant to be irritating.  Sleepy likes to understand.

Lately we have seen hints of what may well be the largest expanded access program for an ALS drug candidate and we have seen many suggestions for FDA legislation and government funding.  We continue to have a large U.S. ALS Registry project with a dearth of status information.  Talk about a mother lode of question material!

We have opportunities to enlighten one another and engage in discussion that will improve the fight, and there surely is a large amount of room for improvement in that fight.

As long as ALS organizations ask for people to follow, they should be willing to engage in some public conversations that will help people understand and contribute to the journey with their ideas.  Organizations don't have to offer perfect solutions, but they should be willing to discuss what may be imperfections so that they have informed constituents.

Questions aren't all bad, and Sleepy does not mean to seem dopey.

Saturday, April 14, 2012

Can Sheep Really Inspire Change?

Sheep are so comfortable staying tight with the flock. When one strays a little, it doesn't take much to modify that behavior right back to the flock. You can even train them with a clicker or hand motions. They frighten easily and can be discouraged from the slightest independent streak. Sheep are easy prey and they stick close together. A border collie can keep even the largest flock focused and headed in the right direction. You shear the wool regularly and sheep are the renewable gift that keeps on giving.

But a bunch of sheep never cured a disease. They have never modified a paradigm. Sheep are not change agents. Sheep don't challenge and inspire. They're sheep. They give you wool and they are ultimately someone's dinner.

Are ALS advocacy programs designed so that only the good little sheep are embraced?

Friday, April 13, 2012

Take The Pledge

Dear "Preeminent ALS Organization,"

Please take the pledge to respond to all emails within 24 hours. Simply respond.

Why would you not respond?

Tuesday, April 3, 2012

I'm Ticked

To the FDA, time is a necessary resource needed to do its job to protect Americans from harm.

To a pharmaceutical company, time is money.

To a person with ALS, time is a thief, quickly stealing life.

The three clocks are not at hopelessly crossed odds. There are mutually beneficial solutions to the problem. The consequences are huge, but the problem itself isn't the biggest in the world.

Will Friedman's next op-ed be "Why America Can't Even Solve A Small Problem That Has Huge Consequences?"