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.

This podcast was produced by Avanti Ramraj with help from Cat Fergesen. The graphic includes public domain artwork by oksmith.

Songs in this podcast: Coming soon.

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 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.

Content warning: This podcast discusses the loss of loved ones.

This podcast was produced by Cat Fergesen. The graphic is by Kenneth Ronquillo.

Songs in this podcast:

“Sandu” by Hugo ‘Droopy’ Contini, CC BY-NC-SA 3.0 https://freemusicarchive.org/music/Hugo_Droopy_Contini/Surpriscording/droopy_contini_-_03_-_sandu https://creativecommons.org/licenses/by-nc-sa/3.0/

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 insurance, health insurance, and how someone with HD and their loved ones might approach the process of accessing those benefits. It’s very complex, and she’s the expert! Listen in to hear what she wants to share with the HD community about this topic.

This podcast was produced by Lauren Hinkley and Cat Fergesen. The graphic is by Cat Fergesen.

Disclaimer: HOPES is a team of faculty and undergraduate students at Stanford University dedicated to making information about Huntington’s disease (HD) more readily accessible to the public. We emphasize that we are not medical professionals or legal professionals, nor are we affiliated with the legal professional whom we interview on this podcast. The information we present is intended for educational purposes only should not be construed as offering diagnoses or recommendations. The legal professional whom we interview is providing ideas about disability insurance that listeners may consider according to their own judgment but should not consider advice specific to their situation.

Songs: “Planet Zero” by Jahzzar, CC BY-SA 3.0 https://freemusicarchive.org/music/Jahzzar/1Up/Planet_Zero https://creativecommons.org/licenses/by-sa/3.0/

“Dark Matter” by Podington Bear, CC BY-NC 3.0 https://freemusicarchive.org/music/Podington_Bear/Thoughtful/DarkMatter https://creativecommons.org/licenses/by-nc/3.0/

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 and how they weathered the end-of-life stage of HD that can be so difficult.

Content warning: This podcast discusses death and grief. There is also discussion of some everyday bodily functions, medical care, and hospital settings. Note: in the podcast, Dawn uses the term “BM” to refer to a bowel movement.

This podcast was produced by Cat Gonzales Fergesen. The illustration is by Kenneth Ronquillo based on photos contributed by Dawn.

Songs in this podcast: “The Devil is a Sad Spirit” by James Beaudreau, CC BY-NC-SA 3.0

“DJ” by Jahzzar, CC BY-SA 4.0

“Space (Outro)” by Andy Cohen, CC BY 4.0

“Interlude 9” by Ending Satellites, CC BY-NC-SA 3.0

“We’re from near and far” by Ending Satellites, CC BY-NC-SA 3.0

“A Day in Port-Royal” by Ending Satellites, CC BY-NC-SA 3.0

“Vladimir Estragon’ by Jahzzar, CC BY-SA 3.0

“No-End Ave” by Jahzzar, CC BY-SA 4.0

“Country Young” by Pheasant, CC BY-NC-SA 4.0