I think the WED Foundation already exists to do what we want done, it just doesn't have the resources or the steam. We have some steam to contribute. If we do it as part of the existing foundation, we can take advantage of their existing credibility and some of their resources... the website, maybe other things.
Our goals should be along the lines of what you proposed earlier, with a lofty goal of ALL (hahah) healthcare practitioners being aware enough of WED to refer a patient properly, and all (haha) neurologists and sleep specialists and X % of GPs having a deeper knowledge of the disease. We would define deeper knowledge as having four components: diagnosis and treatment, which are the biggest parts, and also an understanding of causes and an understanding of consequences in the life of the patient:
Diagnosis - the physician will be able to diagnose WED and eliminate mimics
Treatment - the physician will be able and willing to treat according to a specific protocol (which can't be too rigid)
Understanding of causes - the physician will be aware of low CNS iron, low endogenous opioids, the effect of dopamine drugs (beneficial and awful i.e. augmentation), and whatever else is deemed key by existing specialists
Understanding of consequences - how chronic lack of sleep, medication side-effects, and the presence of symptoms affects the mental and physical health of a patient.
So let's use your idea, we have the overarching goal of all healthcare providers being aware and all specialists knowledgeable, but we start with an initial goal of 10 specialists being knowledgeable - and perhaps, concurrently, raising public awareness (see below). So the decisions that are required next (after writing the goals and determining measures of success), are:
- how to choose the target specialists? -perhaps from 10 different geographic regions?
- how to engage the target specialists - how do we interest them enough to want to participate? this involves development of material.
- how to provide the actual training - what combination of videos, written materials, and other? how do we deliver it? This will require getting the help of existing specialists.
Each of these things can be addressed separately, by different people even.
The goal of making all healthcare professionals sufficiently aware of WED that they can refer a patient appropriately, would require very different material. I see your "who knew it" videos there. I think there has to be a broad target of the "public in general" included in this endeavor somewhere, that would encompass healthcare providers and also the people they come into contact with in their casual lives. Not sure how to measure the success or narrow the goal down from "all".
I know from the way my life is right now (and from this late, sloppy reply) that I am not capable of spearheading this. The "spearheading" would involve keeping everyone else on track, keeping the vision in mind.