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.

Friday, April 26, 2019

And This Is What It Would Take

Dear ALS Organizations,

I learned a big lesson at a grade school attended by families of modest means and run by women who lived on a vow of poverty.

Whenever anybody made a good suggestion that was beyond the resources of the school, those Sisters of Saint Francis always said, "We can't do that, but this is what it would take..."  And you learned the dollars or the added staff or volunteer commitment needed to deliver on that good suggestion.  It showed respect that they actually considered the idea.  The ball was back in the suggester's court, and you would be amazed at how often those with the ideas delivered the resources to make them happen.

In the world of ALS organizations, we get a lot of, "We can't do that."  Resources are limited.  Staff feels that workloads are at the max.  "We can't do that."  Plop.

We need more, "...and this is what it would take..."

Please, take good ideas seriously.  Embrace good changes that stretch your comfort zone.  Be direct and honest if you think an idea is bad or outside your mission. Don't blame your bank account or workload without offering some idea of what it would take to deliver.

Walking away from good ideas is one of the reasons the fight against ALS isn't where it needs to be.  That is what we can't afford.

Thank you.

Sunday, March 10, 2019

To Make Good Decisions, You Need Good Data

It's pretty basic.  You can't make good decisions without good data.

And a core decision in moving ahead with any project is to weigh the value proposition.

You clearly can't evaluate the cost and value without knowing the costs.

A few months ago I started thinking about how we might look at the value proposition of the many functions of the CDC ALS Registry so that we could perhaps identify the high value, low cost features (that are obvious keepers) versus the low value, high cost functions (that might be good candidates to pare back).

As a taxpayer and ALS advocate, I take the value proposition and the importance of the CDC ALS Registry mission seriously.

In January, I asked the head of the CDC ALS Registry how much was spent on research grants in the most recent fiscal year available.  He referred me back to a pie chart that I had forgotten from the last annual meeting --

But that doesn't really break out the granted research dollars for a year.  It glumps a lot of functions together.

I asked again, and he shared that the average research grant is $400,000.  That's not really helpful to try to look at a normalized year of expense data.

I asked again if the last annual spending on external research grants was easy to provide, and I was referred to the Freedom of Information Act (FOIA) office.

Since I was going to have to submit a FOIA request to get some numbers that I thought were probably pretty easy to provide, I asked for estimates of the annual expenditures for several CDC ALS Registry functions for the most recent fiscal year available --
  • Research grants
  • The basic data mining
  • Self-enrollment portal and support and processes
  • Annual MMWR report
  • Annual meeting
  • Risk factor surveys and reports
  • Continuing education
  • Biorepository
  • Research notification
My reply came last week, and I was astonished.  They don't have the data.
The National Center for Environmental Health / Agency for Toxic Substances and Disease Registry (NCEH/ATSDR) performed a search for records, as indicated above. In their response, the National ALS Registry appreciates your inquiry regarding its FY 2017 budgetary activities. As was previously conveyed to you by email on January 23, 2019 from Dr. Kevin Horton—National ALS Registry Program Manager—the average grant for FY 2017 was approximately $400K/year per institution based on a 3 year cycle (Sept 2016 – Sept 2018). Regarding the subsequent, listed program expenditures, there is no direct way to accurately access costs for these specific activities (e.g., data mining, MMWR reports, and research notification) as they are largely elements of daily staff/program duties. The FY 2017 funding pie chart included in your request, represents the most accurate information available.
How can you manage a $10,000,000 annual budget on a project that has consumed $88,000,000 without knowing approximately how much was consumed by each function in your last year of actual data?  How can you decide priorities when you don't know the relative costs of functions?  How can you make good decisions?


Friday, February 8, 2019

Remember POW Bracelets?

During the Vietnam War and after, POW bracelets were a powerful connection that people made with the many missing and prisoners of war.  Each bracelet carried a name.  Those who wore them remembered their POWs constantly.  Bonds grew between people who never actually met in person and those bracelets stayed on wrists for years.  It was a powerful project.

Maybe we need bracelets with the names of people with ALS that all of us healthy people should
wear.  In today's world, we could even have some trackers where you could see your person's ALS  Functional Rating Scale.  And when a person on a bracelet dies, we could issue a new one.  Pretty soon people would have a collection on their arms.

Imagine the power that would be added meetings with legislators or bureaucrats or captains of industry or journalists or healthcare professionals when you issue their PALS bracelets.

Here's Mary Doe.  She has ALS and is 42 and has three kids and is a single mom.  Think of her often.

Here's Joe Doakes.  He's 35 and just got a big promotion and loves his job as an engineer.  He and his wife have a new baby.  Think of him often.

Here's Jane Doanes.  She's 70 and takes care of her husband with cancer.  Now she has ALS.  Think of her often.

Powerful bracelets.

Friday, January 11, 2019

1, 2, 3, RT

It's cheap.
It's easy.
It's effective.

The other day I heard a radio feature for people looking for jobs.  They advised to check twitter because many corporate HR organizations post jobs on twitter first.  It proves to be cheap, easy, and effective for them to find good candidates.

So why do we continue to try to fill clinical trials the expensive, hard, ineffective ways?

What if every ALS trial sponsor knew to tweet information about their open trials seeking participants?  Think something simple like, "The vitameatavegamin trial for ALS is still enrolling in Cleveland and Fargo. For more information see"  Maybe have an easy hashtag like #ALSCT .

Then the minute our major ALS organizations see the tweet, they would RT.  Four major ALS organizations can reach over 50,000 followers with one simple RT.  Pow. And followers would RT.

It's so incredibly simple.

1, 2, 3, RT

Let's just do this.