Posted on by Dr. Francis Collins
Today is International Rare Disease Day. In honor of the occasion, I’d like to pay tribute to a few real-life heroes whose struggles have forever changed the landscape of rare disease research.
Folk singer Woody Guthrie is best known for his song, “This Land Is Your Land.” Written more than 70 years ago, “This Land” has taken its place among our nation’s great anthems, setting forth a vision of inclusiveness that has inspired generations of Americans to “sing along.” But the last couple of verses are often omitted. Here’s a version of one of them:
As I was walkin’—I saw a sign there
And that sign said—no trespassin’
But on the other side … it didn’t say nothin’!
Now that side was made for you and me!
These verses brought into the foreground those whom society had marginalized. “This Land” reminded us of their existence, challenged us to live up to our ideals—and include all people in our best vision of ourselves.
Woody performing one version of “This Land”:
Even as he was singing about inclusiveness, Woody Guthrie was starting a long battle against a disease that increasingly cast him outside mainstream society: Huntington’s disease. In most cases—and as was indeed the case for Woody—symptoms of Huntington’s disease do not appear until adulthood. Gradually, this rare, inherited neurological disorder seizes control of its sufferer’s body, mind—and even voice. In 1965, 13 years after he was diagnosed, Woody fell mute. He had long since lost his ability to play guitar. Two years later, he died at the age of 55.