Registry formed for people with Lou Gehrig’s disease
This article was originally on a blog post platform and may be missing photos, graphics or links. See About archive blog posts.
President Bush signed a bill this week that creates the first nationwide registry for people stricken with amyotrophic lateral sclerosis, which is known as Lou Gehrig’s disease in remembrance of the New York Yankees player who quit baseball in 1939 after his diagnosis and died two years later. The registry is an attempt to collect information on people diagnosed with ALS to provide researchers with potential clues about its cause and possible treatments. The registry will also try to address why American military veterans have a higher risk of the disease.
Passage of the ALS Registry Act represented several years of hard work on the part of patients, families and patient advocates to draw attention to the disease. It’s amazing that more than 65 years after Lou Gehrig died, very little has changed regarding knowledge of the neurological disease. The average person diagnosed with ALS deteriorates quickly and dies within two to five years. The registry may help unify researchers and doctors and provide patients with a stronger voice to lobby for more assistance.
With the closing of the old Yankee Stadium last month, and the Major League Baseball playoffs underway, it’s easy to recall the example Lou Gehrig set for others when he learned that his magnificent baseball career was ending and his life would soon be over. His ‘luckiest man’ speech, available here on YouTube, was among the most cherished heard by baseball fans and represents optimism and gratitude in the face of a terrible disease.
-- Shari Roan