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Huntington Study Group
HD Insights PodcastEpisodes
Huntington Study Group
HD Insights Podcast
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Episodes of HD Insights Podcast
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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
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 dri
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 thei
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 Psycholog
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 s
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 recent
Dr. Dietrich Haubenberger, Medical Director at Neurocrine Biosciences, joined the HD Insights Podcast to talk about his work on the KINECT-HD study and his career journey to this point. KINECT-HD is a Phase 3, randomized, double-blind, placebo-
The HD Insights Podcast sits down with Katie Jackson, President and CEO of Help4HD, a nonprofit patient advocacy organization. Having witnessed the HD lifecycle from her husband's genetic testing results, through onset and progression of sympto
We wrap up our 3-part series on the gene hunting project in Venezuela with insights on the current situation in Venezuela – what has or has not changed in the 25 years since for those HD families and communities – plus impact on neighboring Sou
Dr. Leon Dure, Professor and Director of the Division of Pediatric Neurology and William Bew White, Jr. Chair in Pediatric Neurology at the University of Alabama at Birmingham. He joins Dr. Daniel Claassen for the second in a series of conversa
On this special episode of the HD Insights Podcast, Dr. Daniel Claassen, chief editor of the HD Insights magazine, serves as guest host in speaking with Dr. Ira Shoulson about his perspectives from the research project in Venezuela in the early
HD Insights Podcast caught up with Dr. Lauren Byrne to follow up on a Platform Presentation she gave at the Huntington Study Group’s annual meeting in November on some exciting biomarker research she has been involved in. Working as a research
Dr. Bruce Compas is a Professor of Pediatrics and an Investigator at Vanderbilt Kennedy Center for Research on Human Development. In November 2019, Dr. Compas gave a presentation titled “Families Coping with Illness: Implications for Huntington
On this episode of the HD Insights Podcast, we cover a potential indicator for the progression of Huntington disease that you may not have thought of before - speech. Dr. Adam Vogel is Professor of Speech Neuroscience, at the Centre for Neurosc
On this episode of the HD Insights Podcast, we talk with Chandler Swope from the Huntington’s Disease Youth Organization (HDYO). Chandler has been the Director of Youth Services since 2014, and has helped spearhead a number of key initiatives a
Dr. Mary Edmondson has long been an active advocate in the HD community. Using her family's experience with Huntington disease and lack of quality information available to her as motivation, Dr. Edmondson made it her personal mission to educate
Physical therapy (PT) is a critical component of quality patient care for those with HD. Dr. Lori Quinn and Dr. Nora Fritz joined the HD Insights Podcast to discuss their team’s research that led to the recent publication of clinical guidelines
Dr. Andrew Feigin, Chair of the Huntington Study Group joined us to usher in 2020 and a new year of HD Insights Podcasts. Dr. Feigin is a professor of Neurology at NYU Langone Health and co-director of the Marlene and Paolo Fresco Institute for
Catherine (Cat) Martin is Executive Director of the Huntington's Disease Youth Organization (HDYO). She was recently featured in an article for the Fall 2019 edition of HD Insights, so we were delighted to have talk with her for this episode of
You probably know him better by his blogger name Gene Veritas, of the popular Cure HD blog (www.curehd.blogspot.com). HD Insights Podcast was thrilled to sit down in person with Ken Serbin at the Huntington Study Group's annual November meeting
Episode 6 of the HD Insights Podcast features an in-person conversation with Carolyn Gray, a nurse clinician and HSG Research Coordinator in the Department of Neurology at the University of Kansas Medical Center. Carolyn founded the Huntington
In this episode, we hear from Dr. Martha Nance, a neurologist, geneticist, and Director of the HDSA Center of Excellence at the Hennepin County Medical Center in Minneapolis, Minnesota. Dr. Nance covers a wide range of topics about the impact o
In this episode of the HD Insights Podcast, we present a conversation we had with Dr. Victor Sung at the HDSA National Convention in June. Dr. Sung is the Director of the Huntington's Disease Clinic at the University of Alabama at Birmingham, c
On this episode of the HD Insights Podcast, Dr. Vicki Wheelock, Director of the UC Davis HDSA Center of Excellence, and long-time Huntington Study Group member joins us to talk about her involvement in the Huntington's disease community. From r
In our second episode, HD Insights Podcast welcomed Dr. Joseph Higgins, Vice President, Clinical Development, CNS at uniQure. Over the past summer, uniQure announced in a formal letter to the community that enrollment in the first clinical tria
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