The Huntington’s Disease Society of America (HDSA) is a nonprofit organization dedicated to improving the lives of everyone with Huntington’s disease and their families. It was founded 50 years ago by Woody Guthrie’s wife, Marjorie, shortly after Woody passed away from Huntington’s disease complications when he was only 55 years old.
“Very often Huntington’s disease (HD) is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously,” said President & CEO Louise Vetter, who spoke with ETV to share more about the nonprofit’s mission. “More specifically, HD is a fatal genetic disease that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and currently, there is no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD.”
“HD is a rare disease. Today, there are approximately 30,000 symptomatic Americans, but there are another 200,000 living at-risk of having inherited the disease.”
The nonprofit looked to create a unique digital platform that celebrated the Guthrie Family legacy while getting the word out about the disease. When the ALS Ice Bucket Challenge went viral, every nonprofit was being challenged to come up with an impactful campaign of their own. HDSA decided to stick to its roots and make music. It has now become the place to find the next big singer-songwriter.
In February 2015, the organization launched The Guthrie Sessions at HDSA, an online series that streams professionally edited music videos on HDSA’s YouTube Channel. HDSA will book artists who are willing to volunteer their time to record four or five songs from HDSA’s conference room in New York City or venues around New York City and Los Angeles. The songs are professionally shot and edited by filmmaker and photographer Rae Maxwell. Once the songs are completed, HDSA features the artist for an entire month, posting a new song each Monday. The artist will then share the videos to their fan base. In the end, the artist receives professionally cut music videos and HDSA gets to introduce its mission to a new audience by sharing the Guthrie Family legacy.
“It is a win/win for HDSA and the artist,” Vetter said. “HDSA gets exposure and the artist receives professionally shot and edited music videos shared on new platforms all for an incredible cause. All the videos live on HDSA’s YouTube Channel which is the world’s most comprehensive Huntington’s disease video library. Creating engaging platforms that drives traffic to HD information is crucial.”
Not only has The Guthrie Sessions at HDSA generated unprecedented awareness, it has also created a unique platform that has never been done before by a nonprofit organization battling a rare-disease that represents everything that is great about music.
“Guthrie’s music has had such an incredible impact on many of today’s musicians, so the Guthrie Sessions at HDSA is a way to introduce HD to a new audience who might not have heard of the disease, but have heard of Woody Guthrie,” Vetter said.
Vetter added that the feedback has been very positive, especially when people hear that the artists volunteer to be a part of it. She said the musicians enjoy being a part of something that has deep musical roots and important family advocacy.
“HD families now have another tool for educating communities about the impact of Huntington’s disease,” Vetter said. “It has been so successful that we have already started booking into 2018!”
One of the biggest challenges HDSA faces in its awareness outreach is the fact that if someone does not have HD in their family, there is a good chance that person has never heard of it before. So the Guthrie Sessions offer ways to spread awareness in a unique way.
“When it comes to building awareness, we need to think outside the box to engage influencers to help spread the word,” Vetter said. “We have such a rich history dating back to when Marjorie Guthrie began her crusade to fight HD in her husband’s name. HD families are some of the most inspirational and bravest people on the planet. Creating a platform for them is our responsibility and what better way to do it than through music.”
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