Authors Guild director diagnosed with ALS posts his medical records online

Xeni Jardin 7:35 am Wed Sep 25, 2013

In ALS, motor neurons degenerate, as shown, and eventually die. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. Image: ALSA.org.

Paul Aiken, who has long served as the Executive Director of the Authors Guild, has Amyotrophic Lateral Scleroris, the degenerative neuromuscular disease more commonly known as ALS, or "Lou Gehrig's Disease." My own father died from it.

Aiken is "turning anecdote into data" by posting his medical records online. ALS is a mysterious disease that kills 125,000 people worldwide each year. There are some known genetic links for some "familial" strains, and some theories for other cases, but far more questions than answers—-and no cure or proven effective treatment to control progression. By sharing his data, Aiken hopes to help. Follow the data on Twitter.

(HT: Ivan Oransky)

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