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.

Sunday, August 31, 2014

Do What's RIght - ALS Ice Bucket Challenge Edition

The thoughts below are from a response I made to a prominent ALS clinician who had given his opinion on how the ALS Ice Bucket Challenge windfall should be spent by the ALS Association. I couldn't have disagreed more with his priorities.  I share my thoughts here because I think that the ALS Association has both an obligation and an opportunity to do the right thing.  It's also the smart thing.


Donor Intent Cannot Be Ignored

Donor intent simply cannot be ignored.  Millions of dollars were donated
spontaneously after celebrities and corporate leaders and friends urged people to join with donations for ALS research or to find a cure, followed by a mention or flash on the screen to donate at  Jimmy Fallon's or GMA's cries were not to support a three-pronged organizational infrastructure. The call was to support ALS research.  Whether or not ALSA authorized the enthusiastic research pleas, the fact is that those millions flowed in from generous people who intended to fund ALS research.  That cannot be ignored.

Well over $60 million in ALSA national's donations were made before there was even an option on its donation form to clearly restrict donations to research.  Every organization loves unrestricted gifts, but to ignore the intentions of donors who thought they were giving to research is just wrong.

ALSA has since told people that they can contact them with details of their gifts and they will backtrack and restrict them.  That will eat those donations up in an administrative circus.  ALSA should just do the right thing, earmarking for research everything donated under the IBC that did not have an option to restrict.  

Will (Or Should) The Mississippi River Suddenly Flow North?

ALSA currently has a sustainable revenue model that flows from chapters to the national office.  Contrary to some people's perceptions, funds donated to ALSA chapters (including the substantial walk donations) are shared with the national office.  Chapters have to sustain themselves and most do a good job of that.  They supply a portion of their donations to the national office, some of which comes back to the local clinics in the form of grants.  Money does not rain down on chapters (and their clinics) from the national office.  And even if buckets of IBC (Ice Bucket Challenge) dollars would suddenly start pouring down from the national ALSA heavens onto chapter patient services, would it end up breaking the sustainable revenue engine they already have?  

Catsup Is Not A Vegetable

Some at ALSA have asserted that clinics are really research, so money to clinics is really research money.   Nice try, but until ALSA can deliver on the concept that every clinic patient is a research patient, clinics are patient care.  The spotty uptake on ALS Registry self-enrollment is testament to the fact that not all clinic patients are getting consistent messages of their important role in ALS research.  The fact that a lot of clinic patients are not aware of clinical trial opportunities makes it clear that clinics today are not intrinsic gears in an ALS research machine.  I truly wish that would change, but lack of funds isn't the root cause.

Don't Waste 93 Octane Fuel In A Car That Runs Well On 90

The ALSA public policy organization boasts of being a stellar success.  It attracts its own sponsors and donations directly, has revenues from its conference,  and in addition has a substantial revenue stream from being paid by the CDC for the ALS Registry project.  Even ALSA has not suggested that it is a prong in need of any help from the IBC windfall.  Can they do more regarding public policy?  Sure.  Is it important?  Absolutely.  Does it require IBC money?  No.

Research Isn't Like Mindlessly Buying Lottery Tickets

I understand that the odds of a research success that will work for people with ALS are long.  A high school math teacher (who made a very good living investing) once told his students only to gamble on things where you can increase your odds.  Walk away from lottery tickets.  Walk away from slot machines.  Study and make smart investments.  We know that ALS research is going to produce a lot more failures than successes, yet we can do things that increase the odds of success.  It's worth the investment if we make smart choices that give us the best odds possible, and then we can build on the information that failures provide to make the next bets even smarter.  If we don't invest more in ALS research, we are raising white flags in the war on ALS.  That's just wrong.  

A 21st Century version of the parable of the talents keeps running through my head with the reluctance to move forward now with even a small IBC injection of funds into ALS research.  We don't want ready-fire-aim, but right now it's feeling a lot more like ready-aim-aim-aim-aim with the IBC money. 

Neuroscience research is dreadfully expensive, but information is its sustainable feature.  If we gather and use the information well, even the failures will have been a good investment. 

Bringing Us Full Circle -- Donor Intent Aligns With A Good Change In The War Against ALS

If we beef up three prongs and do what we've always done, we'll just get more expensive versions of the past.  That's not good enough.  Let's keep doing what already works (and has already proven to be monetarily sustainable) and add some brains and resources to research efforts.  Donor intent matters, and in this case, it can indeed change the game with some new game plans and execution dedicated to smarter ALS research.

Thanks for listening.  If I'm wrong on anything, I'm all ears.


  1. Gail Matthiesen GleasonAugust 31, 2014 at 12:34 PM

    Thank you for a very thoughtful article that clearly looks at all sides of what to do with the ice bucket donations. I agree that the majority of donors expected the money to go to ALS research which is desperately needed rather than administrative expenses. I also agree, that while it is possible for the clinics to do research, including systematically gathering data for the ALS Registry, it would be aimed at improving services and efficiency, which is not a bad idea, but would not require a lot of additional funds. My biggest concern is that the bulk of the funds goes to research. However, that needs to be in a thoughtful, effective manner.

  2. Interesting perspective but I completely disagree. I have never seen anywhere that IBC is ONLY for medical research. The ALS community has been promised that we are on the brink of a medical breakthrough for 20 years but we are no closer to a treatment or cure that when ALS was first defined 140 years ago. It would be a tragedy if this outpouring of public support was spent without a single pALS benefiting. Clearly, research should put into high gear but with $100M and counting, there is a real opportunity to make a profound difference in what it means to LIVE with ALS instead of dying from it. Until medicine proves otherwise, technology IS the cure.
    ~Steve Saling

  3. I've been pushing for 75% of ibc $ to go to research. 25% to clinics and patient services is still a lot of money. I see ibc as a chance to get closer to treatments and cures and a great way to impact future generations of pALS and cALS. If we don't push hard on research, we kick the can down the road and ensure continuing suffering by future patients. Of course, that assumes wise investments in research, something we don't have a great track record of doing.