HOPES has expanded the selection of platforms where you can find our podcast! You can now listen to all 12 episodes of the HOPES podcast on Spotify, Youtube, Amazon Music, or RSS.com. You can follow along with transcripts on Youtube and RSS.com! Episodes 1-8 are still available on Soundcloud, but we will no longer be posting new episodes on our Soundcloud site.
Check out our podcasts here. Thanks for listening!
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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.
by Maria Carla Correa
The Huntington’s Disease Society of America (HDSA) and their Centers of Excellence host Education Day, an annual event dedicated to patients, friends, and families, experts, and anyone interested in learning about Huntington’s Disease. Usually, the events are hosted in person by the Centers of Excellence, but for this year, they are virtual due to COVID. So far Centers from the South Dakota, Missouri, and San Diego chapters have hosted an Education day, and on May 7th, 2022, Stanford University’s Center of Excellence’s will host an Education Day of their own.
The event will run from 8:30 a.m. to 11:35 a.m. PT, and will feature the Center’s director, social workers, doctors, and more. The schedule of planned programming for Education day is as follows:
8:30 – 8:40 a.m. – Dr. Sharon Sha, the director of Stanford’s Center of Excellence, provides attendees with and introduction and welcome
8:40 – 9:10 a.m. – Betsy Conlan, a Licensed Clinical Social Worker, and Carly Siskind, a genetic counselor, from the Center partake in a Q&A session about social work and genetic counseling
9:10 a.m. – 9:30 a.m: – Dr. Gaurav Mohit Chattree, Dr. Phuong Thi Hoang, and Dr. Jessica Ng speak about medication for Huntington’s Disease
9:30 – 9:50 a.m. – Dr. Maya Katz, a doctor at the center and a Clinical Associate Professor, discusses palliative care and its use for patient well-being
10:00 – 10:20 a.m. – Break
10:20 – 10:35 a.m. – Cat Fergesen, a podcaster for HOPES, and Mason Gonzalez, a student researcher for HOPES, discuss the cancellation of the Generation-HD1 study and share an interview with a study participant
10:35 – 10:45 a.m. – Panel discussion
10:45 a.m. – 11:00 a.m. – Dr. Silvia Russo shares insight into common cognitive problems of HD and workarounds that exist to address these
11:00 a.m. – 11:20 a.m. – Physical Therapist for Outpatient Rehabilitation Jesse Klimek speaks about Rehabilitation for Huntington’s Disease
11:20 – 11:35 a.m. – We close off Education Day with a message from Therese Crutcher-Marin, the Chair for the HDSA San Francisco Bay Area Affiliate, discussing the “Who, What, Where, When, and Why the SF Affiliate.”
If you or anyone you know would like to attend this event, please register using the following link: Stanford Registration for Education Day 5-7-22
We look forward to seeing you there and gaining the chance to continue learning about Huntington’s Disease together.
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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
https://freemusicarchive.org/music/James_Beaudreau/The_Devil_is_a_Sad_Spirit/The_Devil_is_a_Sad_Spirit
https://creativecommons.org/licenses/by-nc-sa/3.0/us/
“DJ” by Jahzzar, CC BY-SA 4.0
https://freemusicarchive.org/music/Jahzzar/DJ/DJ_1369
https://creativecommons.org/licenses/by-sa/4.0/
“Space (Outro)” by Andy Cohen, CC BY 4.0
https://freemusicarchive.org/music/Andy_G_Cohen/Through_The_Lens/Andy_G_Cohen_-_Space_Outro
https://creativecommons.org/licenses/by/4.0/
“Interlude 9” by Ending Satellites, CC BY-NC-SA 3.0
https://freemusicarchive.org/music/endingsatellites/And_so_sing_the_black_birds/05_Ending_Satellites_-_Interlude_9
https://creativecommons.org/licenses/by-nc-sa/3.0/
“We’re from near and far” by Ending Satellites, CC BY-NC-SA 3.0
https://freemusicarchive.org/music/endingsatellites/And_so_sing_the_black_birds/03_Ending_Satellites_-_Were_from_near_and_far
https://creativecommons.org/licenses/by-nc-sa/3.0/
“A Day in Port-Royal” by Ending Satellites, CC BY-NC-SA 3.0
https://freemusicarchive.org/music/endingsatellites/And_so_sing_the_black_birds/04_Ending_Satellites_-_A_day_in_Port-Royal
https://creativecommons.org/licenses/by-nc-sa/3.0/
“Vladimir Estragon’ by Jahzzar, CC BY-SA 3.0
https://freemusicarchive.org/music/Jahzzar/Blinded_by_dust/Vladimir_Estragon
https://creativecommons.org/licenses/by-sa/3.0/
“No-End Ave” by Jahzzar, CC BY-SA 4.0
https://freemusicarchive.org/music/Jahzzar/Tumbling_Dishes_Like_Old-Mans_Wishes/No-End_Ave
https://creativecommons.org/licenses/by-sa/4.0/
“Country Young” by Pheasant, CC BY-NC-SA 4.0
https://freemusicarchive.org/music/Pheasant/Gravel_Beach/03_-_Pheasant_-_Country_Young
https://creativecommons.org/licenses/by-nc-sa/4.0/