Interview series with the people working in Huntington's disease research and treatments
Episode 26 - Erin Paterson
Toronto author and public speaker, Erin Paterson, tested gene positive for Huntington’s Disease (HD) in 2007. Shortly after she started suffering from depression, then received more crushing news, she was infertile. Despite those diagnoses she was determined to have a family and live a joyful life. She is a proud mom who loves to run and bike in her spare time.
She is on a mission to positively impact other people’s lives by writing and speaking about genetic disease, depression, and infertility. She shows it is possible to live a meaningful life even when faced with unexpected obstacles. She is the author of, All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness (view on Amazon.com)
Erin Paterson is also the founder of Lemonade Press, a local publisher focused on empowering patient communities by helping people write and share their own journeys in specialized medical anthologies. To learn more about Erin, visit her website www.erinpaterson.com.
Episode 25 - Seth Rotberg
Seth Rotberg joined the HD Insights Podcast for this episode. Seth is a patient advocate, community connector, and motivational speaker who is passionate about bringing his personal experience to support the health community. His passion is driven by his mother's 17-year battle with the rare, genetic disease known as Huntington's Disease (HD). Five years after learning about his mother's diagnosis, Seth went through genetic testing and found out he tested positive for HD and may end up like his mom one day.
In 2019, Seth co-founded the nonprofit, Our Odyssey, to provide year-round social and emotional support to young adults impacted by a rare or chronic condition. He has a master's in nonprofit management from DePaul and currently resides in Cambridge, MA. Professionally, he works as the Patient Leader Recruitment Manager at WEGO Health. To learn more about Seth, visit https://www.sethrotberg.com. For more information about Our Odyssey, go to https://ourodyssey.org.
Episode 24 - Amy Chesire & Greg Suter
Amy Chesire (University of Rochester) and Greg Suter (Hereditary Neurological Disease Centre) are long-time site coordinators for clinical trials in Huntington's disease. On this episode of the HD Insights Podcast, we spoke with both about their history of working with clinical study participants and their current experience with participants on the KINECT-HD study.
KINECT-HD is a Phase 3, randomized, double-blind, placebo-controlled study investigating valbenazine for treatment of chorea in Huntington disease. The study is being conducted at sites across the U.S. and Canada. Additional information about the study can be found at www.KINECT-HD.org.
Episode 23 - Dr. Nicolò Zarotti
We were joined by Dr. Nicolò Zarotti to discuss the first national guidance on psychological interventions in the United Kingdom for people with HD, ALS, Parkinson’s, and multiple sclerosis, which was recently published by the British Psychological Society (BPS). He describes what he learned throughout the course of that research, and why he considers that publication a “call to arms” for the criticality of psychological support in HD care. Dr. Zarotti pursued his PhD at Lancaster University investigating emotional processing and communication in people with Huntington’s disease, and is currently pursuing a Doctorate in Clinical Psychology (ClinPsyD) at the University of East Anglia, while continuing to carry out research on psychological approaches to neurodegenerative diseases like HD.
You can read the published guidance by visiting the BPS news release. To learn more about Dr. Zarotti's research, visit his profile on Google Scholar.
Episode 22 - Dr. Michael Hayden and PROOF-HD
Dr. Michael Hayden, Chief Executive Officer for Prilenia Therapeutics, and a Killam Professor at the University of British Columbia, joined the HD Insights Podcast to discuss the PROOF-HD clinical study. Prilenia (https://www.prilenia.com) is sponsor for the currently active PROOF-HD trial, a global study evaluating the efficacy and safety of pridopidine in patients with early stage of Huntington disease. Dr. Hayden spoke about this new study's unique endpoint for total functional capacity. You will also want to hear his inspiring personal journey that led him into Huntington disease research growing up in South Africa.
For more information on PROOF-HD, visit https://huntingtonstudygroup.org/proof-hd/.
Episode 21 -Brendan McLaren (Monash University)
HD Insights Podcast welcomed Brendan McLaren, Provisional Psychologist, Doctor of Psychology (Clinical Neuropsychology) Candidate, at Monash University (Melbourne, Victoria, Australia). On this episode, Brendan discusses research that he recently presented, titled MOBILE APP-BASED ASSESSMENT SHOWS THAT LESS PHYSICAL ACTIVITY, AND LONGER TIME IN BED, ASSOCIATE WITH POORER COGNITIVE FUNCTIONING IN PRE-MANIFEST AND EARLY MANIFEST HUNTINGTON’S DISEASE. It’s an interesting look at these two areas, which don’t have much in the way of prior research, and it combines the use of some popular and well-known wearable technology.
For more on the lab at Monash where this and other research work is being done, visit http://hrgv.org.au/Research/Labs/CCN.html.
More relevant to academics than members of community
I hope that the first episode is not indicative of the entire show... while the interview with Dr. Claassen was enjoyable - he seems like an incredible person who I’d love to get to know! - it didn’t have much particularly interesting content to a person who is a member of an HD family. While getting to know a physician more in depth as far as hobbies like viola or golf or their academic history is pleasant, I’d be more interested in spending 30-40 minutes of my time listening to how people are addressing issues in the HD community. What issues do the HD community currently face?
Is there any difficulty getting the sample sizes needed for drug development? Is the tendency for at risk individuals to not get genetically tested a challenge for drug developers? Maybe in interview with a patient who was actually in a clinical trial.
What about the threats to the ACA and pre-existing conditions? Loopholes in GINA?
What about the topics of financial and family planning decisions for genetic positive people?
What about status updates to the Huntington’s Parity Act? Interviews with members of congress?
My father is in late stages and I have recently been through genetic testing. I want to know about issues and topics that are relevant to me. I’m not interested in hearing about physician’s personal interests or topics that would mostly only be interesting to academics.
And maybe this is supposed to be more of a podcast for researchers — if that is true, then please just indicate it as such on the podcast description. Oh, and also, focus on relevant and interesting research results.