THE BLOG

The Note of Hope: Woody Guthrie Center Partners for Huntington's Awareness

05/29/2015 05:46 pm ET | Updated May 29, 2016

The Woody Guthrie Center is, at its core, an educational facility, so when we were approached about screening The Lion's Mouth Opens in our theater, we were thrilled with the opportunity. This documentary not only follows one person's journey, it also raises awareness of Huntington's Disease, which will hopefully result in additional research for a cure. This fight for research and a cure was begun through the tireless work of Woody's wife Marjorie, who helped found the Committee to Combat Huntington's Disease, later formed into the Huntington's Disease Society.

This dreadful disease robbed Woody and his siblings of their mother, Nora Belle, who was institutionalized in an asylum for the mentally ill, where she passed away due to complications from Huntington's. The lack of understanding of Huntington's and the limited care provided for this particular disease was repeated as Woody began displaying the same symptoms in 1954. The disease that took his mother also robbed the world of one of the most prolific writers and persistent advocates for social improvements.

Guests who tour the Center often ask for more information about Huntington's Disease. Many struggle to find a comparable degenerative disorder to associate with Huntington's, but we encourage them to think of each disease as its own dreadful condition. They are curious to learn more, so we take every opportunity to partner with HDSA and families who struggle to care for victims in order to continue the fight Marjorie Guthrie started so long ago.

One of the panels within our Center describes Woody's final years and his struggle with the realization he had inherited the disease. This section of Woody's biography is of particular interest to Woody Guthrie fans as they seek to learn more about Huntington's. A portion of this section notes:

"As Woody's condition progressed, he suffered from bouts of deep depression, anxiety, and an unsettled mind -- the early signs of Huntington's disease. In a letter he wrote to Marjorie, he worried about this condition. 'Confused states of mind, a kind of lonesomeness, a nervousness stays with me no matter how I set myself to reading, painting, or playing my guitar,' he wrote. 'Without trying to make it sound too serious, it never does get quite right in my head.'"

While we are certainly not experts in the field of neurological diseases, we do see the effects of Huntington's on Woody's ability to write and communicate as well as his state of mind. However, even when faced with this long, difficult journey of hospitalization in mental wards that lasted for 13 years, Woody's spirit is still visible. Photos show the twinkle that never left his eyes, and his writing during the early stages of his hospitalization expresses a theme of hope -- hope for the future, hope for peace, hope for our world. The hope that never left Woody is the same hope that we share for future research and a cure, but this will only be done through advocacy and increased awareness about the disease.

Our guests to the Center, Woody Guthrie fans worldwide, and society in general need to hear this message, and it is an incredible honor for the Woody Guthrie Center to screen the documentary in our theater. There is so much work to do -- it's time.

This op-ed is a part of a Huntington's Disease Awareness Month collection and in collaboration with The Lion's Mouth Opens, premiering on HBO this June 1st at 9/8c and available on HBOGo and HBONow.