Saturday, January 22, 2011

Curing ALS Is Hard. Adding A Button To Your Website Is Not Hard.

The CDC's ALS national registry is a place to guarantee that information on everyone with ALS (and the clues that he or she may harbor) will be retained for epidemiologists and scientists. We finally have a place to start collecting the dots so that they might be connected.

The process to fill the registry is interesting. The CDC will mine data in Medicare and Medicaid and other files looking for ALS diagnoses. At the same time, people with ALS are able to self-enroll via a website - . The self-enrollees are able to supply some added information that the CDC would not have found fishing for data, and self-enrollment guarantees that a person with ALS is counted.

The CDC's marketing campaign to encourage people with ALS to enroll has been less than stellar. We all lose if people do not self-enroll. We all lose if the registry's data indicate that there are few people with ALS. We all lose if scientists don't have a complete picture of cases.

Why have all organizations with skin in the fight against ALS not put button-links to the registry on their websites? Sleepy does not understand why a person can go to the websites and blogs and facebook pages of so many organizations and not see a simple link to encourage people with ALS to self-enroll. Why?

Here's the page with the snippet of html that you need to add a button to a website --

Dealing with ALS is hard. Curing ALS is hard. Adding a registry button to your website is not hard.

All people with ALS deserve to be counted, and certainly the ALS organizations that lead the fight can encourage them. Each person counts, and the days of burying the clues when we bury the thousands who die from ALS should be over.

Here are a few organizations that have failed to add buttons yet --
p.s. When you add your button, I'll be happy to take you off the list. Thank you.
p.p.s. Special thanks to ALSA and to Les Turner ALS Foundation for never making the list.
As of Feb. 18, we're glad to see registry buttons at and and . Looking good! Thanks, all.
As of Mar. 3, we're happy to report a registry button at .
We're making progress!

1 comment:

Steve said...

Thanks for the tip!