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.

Monday, January 16, 2023

We Have A Santa Claus Problem

 We have a Santa Claus problem.


We read of an NIH that has expertise and exerts leadership in other areas such as cancer or infectious diseases.

NIH is in the midst of doing a strategic plan for ALS, and so far in the drafts, we have seen a punch list of 15 priorities.  There is a little something for everyone in ALS research. In the plan, NIH (specifically NINDS) will give grants and our researchers will have resources to move their work ahead.  It's like Santa Claus, and who doesn't love Santa!  But Santa doesn't provide a grand vision of where we're going or accountability for how we're getting there.  Santa has something for everyone in the form of fixed grants.  Santa is not providing leadership or expertise for ALS.  This is a problem, but who is going to talk about it because who doesn't love Santa?


For over a decade we have watched a CDC ATSDR Registry disappoint when it comes to deliverables on the incidence and prevalence of ALS in the US.

Somewhere along the way, a generously funded Registry project started giving grants to researchers for epidemiological work related to ALS.  It was like Santa funding important work that seldom if ever was directly related to the basic disappointing Registry work.  But who doesn't love Santa?  ALS researchers loved the CDC ATSDR Registry, not because it was fulfilling its core mission, but rather because it was a source of valuable grants every year.  Who is going to criticize the Registry work because who doesn't love Santa?

We have a Santa Claus problem, and until we admit it and make government agencies be accountable for leadership and results rather than just doling out grants, we will continue to be stuck with a big red bag full of fragmented, expensive research projects.  

But who doesn't love Santa?