HOPES Podcast

Welcome to the HOPES podcast! 

We share stories of caretakers, doctors, people with Huntington’s Disease, and others in the Huntington’s community. You can now listen to the HOPES podcast on Spotify, Youtube, Amazon Music, or on RSS.com. Have listening difficulties? Each podcast comes with an automatically generated transcript that you can easily follow along with on RSS.com and Youtube.

Spotify 

Youtube 

All Episodes

As an individual with Huntington’s Disease, a family member, or a caregiver, have you ever struggled to access the medical care that you need? Huntington’s Disease (HD) is a rare neurological disease that has a worldwide prevalence of 5-10 cases per 100,000 individuals. Those affected may sometimes experience long wait times or must travel thousands of miles to reach medical specialists with the ability to provide care for Huntington’s. In this episode of the HOPES podcast, our newest podcaster, Avanti Ramraj, speaks with UC Davis neurologist and professor Dr. Alexandra Duffy about why access to Huntington’s Disease care is so limited and the potential for expanding care to reach all those in need.

Listen on Spotify | Amazon Music | Youtube (transcript available) | RSS.com (transcript available)

Music credits coming soon.
Podcast produced by Avanti Ramraj.
Graphic includes public domain artwork by oksmith.

In episode 11, we speak to Max Moon, who is the volunteer director of advocacy at the Huntington’s Disease Society of America (HDSA), and Cole Holderman, who is a former co-leader of HOPES, a current HDSA board member, and an aspiring doctor. Neither have HD in their families, but were drawn to HD advocacy nonetheless, and continue to be involved in different ways. Listen in for their insights into advocacy, their service philosophies, and their advice on getting involved.

Listen on Spotify | Amazon Music | Youtube (transcript available) | RSS.com (transcript available) | HOPES website

Music found on freemusicarchive.
Podcast produced by Cat Fergesen.
Graphic by Kenneth Ronquillo.

In episode 10, we feature special guest Allison Bartlett, Esq., a licensed disability attorney who currently serves as the manager of disability programs at the Huntington’s Disease Society for America (HDSA). Allison walks us through disability, both private and public, long-term care insurance, health insurance, and how someone with HD and their loved ones might approach the process of accessing those benefits.

Listen on Spotify | Amazon Music | Youtube (transcript available) | RSS.com (transcript available) | HOPES website

Music found on freemusicarchive.
Podcast produced by Cat Fergesen.
Graphic by Cat Fergesen.

In episode 9, we meet Dawn, who took care of Tom, her partner of 35 years, throughout his life with HD. Listen in to hear Dawn and Tom’s story and how they weathered the end-of-life stage of HD that can be so difficult.

Listen on Spotify | Amazon Music | Youtube (transcript available) | RSS.com (transcript available) | HOPES website

Music found on freemusicarchive.
Podcast produced by Cat Fergesen.
Graphic by Kenneth Ronquillo.

In episode 8, we hear from a psychedelics user who is gene positive for HD, a researcher from the University of Saskatchewan on cannabinoids for HD, two researchers from the Johns Hopkins Center for Psychedelic and Consciousness Research, and a psychedelic-assisted psychotherapist and research consultant about research on these cannabinoids and psychedelics and their therapeutic potential.

Listen on Spotify | Amazon Music | Youtube (transcript available) | RSS.com (transcript available) | Soundcloud 

Music found on freemusicarchive and freesound.org.
Podcast produced by Cat Fergesen.
Graphic by Cat Fergesen.

In episode 7, we meet a young couple who found out their HD status completely by chance – and in a pretty unusual way – thus introducing serious complications into their plans for building a family.

Listen on Spotify | Amazon Music | Youtube (transcript available) | RSS.com (transcript available) | Soundcloud

Music found on freemusicarchive.
Podcast produced by Cat Fergesen.
Graphic by Kenneth Ronquillo.

In episode 6, we learn about juvenile Huntington’s Disease (JHD) and hear from a caretaker of a JHD patient.

Listen on Spotify | Amazon Music | Youtube (transcript available) | RSS.com (transcript available) | Soundcloud

Music found on freemusicarchive.
Podcast produced by Sammy Potter and Cat Fergesen.
Graphic by Kenneth Ronquillo.

In episode 5, we speak to Lizzie, a young woman whose family has been impacted by Huntington’s Disease, and how she and her siblings have dealt with the dilemma of whether or not to get tested. This episode of the HOPES Podcast is dedicated to Lizzie’s father, Arturo (1957-2020).

Listen on Spotify | Amazon Music | Youtube (transcript available) | RSS.com (transcript available) | Soundcloud

Music found on freemusicarchives and freesound.org.
Podcast produced by Cat Fergesen.
Graphic design by Kenneth Ronquillo and Cat Fergesen.

In episode 4, we spoke with Anna Canoni, Woody & Marjorie Guthrie’s granddaughter, about how Woody’s battle against HD spiraled into the international HD community we have today. From this point forward, we plan on putting out a new episode every month.

For more information on Woody Guthrie Publications, visit www.woodyguthrie.org

Listen on Spotify | Amazon Music | Youtube (transcript available) | RSS.com (transcript available) | Soundcloud

Music found on freemusicarchives.
Podcast produced by Sammy Potter and Cat Fergesen.
Graphic design by Renad Abualjamal.

In our second episode, the HOPES podcast follows Nancy Wexler’s hunt to discover the Huntingtin gene.

Listen on Spotify | Amazon Music | Youtube (transcript available) | RSS.com (transcript available) | Soundcloud

In our first episode, historian Alice Wexler guides us through the history of Huntington’s Disease.

Listen on Spotify | Amazon Music | Youtube (transcript available) | RSS.com (transcript available) | Soundcloud