The HOPES Podcast from Stanford

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 a...

What is HD advocacy? How can people get involved, and how do people who don’t have HD in their families, but still want to help, fit in? On this episode of the HOPES podcast, 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 docto...

Dealing with HD means having to jump through a lot of legal hoops to get the support that you need. Today on the HOPES Podcast, 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...

In this episode of the HOPES podcast, we meet Dawn, who took care of her partner of 35 years, Tom, throughout his life with HD. For caregivers, looking after a loved one with HD means facing the unfortunate realities of the disease, and looking for moments of connection in the worst of times. For some, it also means grieving your loved one before they pass. Listen in to hear Dawn and Tom’s story a...

In this episode of the HOPES podcast, we’re talking about the brain on drugs. The recent movements to legalize cannabis and psychedelics in the United States and other countries around the world is based in part on promising research into the potential health benefits of the drugs when used in controlled settings. Listen in to hear from a psychedelics user who is gene positive for HD, a researcher...

Having a family isn’t an easy task, but it’s a dream that many young couples hope for. When a genetic neurodegenerative disease is part of the picture, though, what does having a family look like? Today in the HOPES Podcast, we meet with a couple who found out their HD status completely by chance - and in a pretty unusual way. HD changed not only their lives, but the lives of the generations of th...

As rare as Huntington’s Disease is, even rarer is Juvenile Huntington’s Disease (JHD). What is JHD? How is it different from HD? What is it like to have JHD? Learn about JHD and hear from a caretaker of a JHD patient on this month’s HOPES Podcast! The music heard in today’s episode was found on freemusicarchive. Podcast produced by Sammy Potter and Cat Fergesen. Graphic by Kenneth Ronquillo For mo...

If you had the power to know if you would develop a neurodegenerative disease, would you want to know? How could that choice be impacted by the dynamics of family, finances, and mental health? We talk to 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...

The HOPES podcast is back! 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 To learn more about HOPES or Huntington’...

In our third episode, the HOPES podcast talks to Dr. Lisa Stanek, Senior Principal Scientist at Sanofi, about her Huntington’s Disease research. Dr. Stanek’s paper discussed in this episode can be found at: https://www.ncbi.nlm.nih.gov/pubmed/24484067. The music heard in today’s episode was found on freemusicarchives and includes the following: “Carousel” by Johnny Ripper “I’m not here” by Johnny...

In our second episode, the HOPES podcast follows Nancy Wexler's hunt to discover the Huntingtin gene. We used music from freesound.org and freemusic archives. Today you heard: "Slow Sad Tones" by TJ Mothy "Treasure Hunt (Instrumental)" by Simon Panrucker

We share stories of caretakers, doctors, people with Huntington’s Disease, and others in the Huntington’s community. This podcast is run by HOPES, the Huntington’s Outreach Project for Education, at Stanford. In the first episode, historian Alice Wexler guides us through the history of Huntington's Disease. Music is from freesound.org and Free Music Archives. The music featured in this episode inc...