A Picture Is Worth A Thousand Words

A thousand pictures are worth a million words.

Here's an idea for an ALS organization.

1. Buy a bunch of inexpensive 3x5 frames at Michael's or Hobby Lobby or some emporium with lots of inexpensive frames.  Buy a model that is pretty standard because you'll probably need to buy more soon.

2.  Every time you meet with a new person with ALS, get a picture.  Print it and frame it and hang it on an office wall.

The wall will fill.  You will be amazed at the the people you will have worked with over the years. You will not forget them.  They will remind you and everyone who enters your office why you're there.

Keep going down the hallway and around the supply closet if need be.  If you fill up ever inch of wall space, perhaps it's time to reevaluate the fight.

Let's Have The Ultimate Hat Tip Competition

This probably won't happen, but Sleepy can still dream.

Dear ALS Organizations,


We're having a contest for you.  


A mystery donor has recently won $1,000,000 to invest in the fight against ALS.  Your help is needed in designing a diversified portfolio for that donor.  Here are the rules:

• Design a portfolio of recipients of the entire $1 million that will best serve the battle against ALS.
• Your organization may receive up to half of the funds.
• You must pick four other IRS-recognized charities to be recipients of the remaining funds.
• If yours is an umbrella organization, the four others may not be under your umbrella.

The spirit of this contest is to recognize that there are a lot of good organizations that can complement one another in the fight against ALS.  There are different research organizations.  There are social service organizations.  There are advocacy organizations.  There is so much to be done in the fight against ALS that one organization can't do it all.  There is so much to be done in research that a single approach surely isn't a wise investment.


Please design and enlighten us.

Think of it as the ultimate hat tip.

Unfortunately People Won't Pay To Sit To Defeat ALS

Many years ago I was at a meeting where an ALS fundraiser was being discussed.  It was to be a lovely gala in a beautiful location.  There would be delightful hors d'oeuvres, drinks, and desserts in an evening of dancing.  Something bothered me about raising funds that way for a disease that steals your ability to eat and drink and dance and dress yourself in party clothes.  I understand the realities of fundraising, but the ironies of celebrating a cause that way still bother me. 

Perhaps sometime we should have an new kind of fundraiser where healthy people would pay to sit for three hours in a wheelchair without moving.  There could be dinner fundraisers where hungry guests would dine on puree and assorted vintages of chilled Ensure.  Or maybe some olympic-style events where individuals lift others off the floor and back into a chair.  Ah, the gravity games. The possibilities are limitless.

The realities of fundraising are that certain kinds of events like walks and galas work.  It still bothers me.  ALS is a disease like no other.  Perhaps it needs some new ways to raise funds and attention like no other.

Perhaps.

This Is It

May 31, 2012, the last day of ALS Awareness Month in the U.S.

We watch and listen for the noise and flash and splash of a grand finale.

I'm Leaving It All Up To You

Dear ALS Charitable Organizations,

Are you diversified or simply fragmented?

You decide.

Please grow up.

We Have A Simple Pizza Problem

We need more pizza to feed the team.  All the players are hungry.

Which team is more likely to win?

A. The one whose players plot and scheme to grab a bigger or extra piece of the pie?

B. The one whose players figure out a way to order a larger pizza?

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.

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?

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?

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?"

It's Time To Wake Up!

Yesterday morning Sleepy received a mass emailing from an ALS organization that was a huge wake-up call. The organization is touting a two-year "study" that it is doing to locate ALS clusters worldwide using an online survey.

That's a very interesting and noble topic. Here's the claim --

Through the information obtained, we will create an extensive database and interactive online map that will identify all suspected or reported clusters, patterns and hotspots of the disease around the world.

Sleepy's no genius, but even Sleepy knows that it would take a remarkable and tremendously expensive effort to deliver on that claim. Today it's easy to write an online survey and map results. It's a lot harder to gather and interpret scientifically sound data that would be useful to scientists. That's one of the reasons why ALS advocates have been working for years to have an epidemiologically sound National ALS Registry at the CDC.

Sleepy's wake-up message for the day is for all patients with ALS in the United States to self-enroll in the U.S. National ALS Registry at
http://www.cdc.gov/als
...and after that if you choose to contribute personal information to any other surveys, be aware that "interesting" is not the same thing as "statistically significant."

There's Irony In Those Tweets

A tweet yesterday from an ALS organization...

Who does #ALS affect? How many people does it affect annually in the United States? Does it effect men more than women?http://ow.ly/8kMgq

I was anxious to click on the link to find the answers (which I don't believe we really have).

Now that's irony.

Perhaps 2012 Will Force Some New Dimensions to "ALS Advocacy"

There are some interesting things bubbling that may move ALS organizations to break out of their ruts.

1. There is an ethics issue that would be wrong to ignore.
2. We spend millions on an national U.S. ALS Registry, yet are patients really self-enrolling? Why not? Mission not accomplished.
3. Studies and organizations have touted ALS multidisciplinary clinics as providing clearly better outcomes for people with ALS, yet our veterans with service-related ALS are not provided with multidisciplinary clinics by the VA. What is wrong with this picture?
4. Newly diagnosed ALS patients report vastly different experiences in clinical trial recommendations from their neurologists. Some encourage, some discourage, some seem clueless.
5. ALS is still the best-kept-secret killer disease.

Sleepy won't expect miracles regarding number 5 (it's not new) but expects that the first four will boil to the point that our ALS organizations will need to step up and do some new things. Same old same old won't cut the mustard in 2012.