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Rare Disease Day: We’re Joined Together by This Common Thread

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Rare Disease Day Logo

Watch my Rare Disease Day song on video!

Tomorrow, the National Institutes of Health (NIH) will mark the seventh annual Rare Disease Day. As part of that gathering, I’d like to share this amateur video. What you’ll hear is an adaptation of a song I once heard sung at a folk festival, but I’ve changed the words. I’m now dedicating this to all of the good people whose lives have been touched by rare diseases.

While the spur-of-the-moment camerawork leaves something to be desired, I love the spirit of this video. It was shot at a gathering of the Moebius Syndrome Foundation in Philadelphia in July 2012. Moebius syndrome is a rare neurological condition, present from birth, that primarily affects the muscles controlling facial expression and eye movement. However, if you watch the video all the way to the end, or read the lyrics at the bottom of this post, I think you’ll find that this song strikes a chord for all such rare conditions.

In the United States, rare diseases are defined as conditions that affect fewer than 200,000 people. That doesn’t sound like a lot. However, when you consider that more than 6,500 conditions fall into this category, rare diseases are a challenge collectively faced by as many as 25 million Americans.


Making This A Land for You and Me

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Photo of Woody Guthrie and Led Belly walking down a dirt road

Photo from liner notes of the Folkways CD

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.