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 he…

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…

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 th…

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 consid…

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 prido…

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…

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-controlled study investigating valbenazine for treatment of chorea in Huntington disease. The study is bei…

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 symptoms, to his passing last year, Katie’s personal story is one of determination and hope that has her efforts…

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 South American countries. Dr. Ignacio Muñoz-Sanjuán, President and Founder of FACTOR-H, joins Dr. Claassen on…

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 conversations about the research project in Venezuela a quarter-century ago that led to the discover of the HD gen…

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 1990s that ultimately led to the discovery of the HD gene. He shares fond memories of what it was like to…

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 assistant with Dr. Ed Wild, Dr. Byrne helped establish and manage a HD biofluid collection called the HD-C…

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 Disease”, that covered research into stress, coping, and resilience for families dealing with chronic ill…

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 Neuroscience of Speech at The University of Melbourne in Australia, where his team works on improving how we reco…

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 aimed at helping young people deal with the impact of Huntington’s disease, including the annual North Amer…

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 herself on HD. In doing so, she became board certified in Internal Medicine and Psychiatry, helped start …

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 for the use of physical therapy with HD patients, along with the broader impact and considerations for in…

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 Parkinson’s and Movement Disorders. He has been involved in HD research since his participation in the Ve…

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 the HD Insights Podcast. Cat has both a personal and professional background working with families and yo…

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, HSG 2019, that was held in Sacramento. We asked Ken about his journey, including the genesis of both the…

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 Disease Clinic and Genetic Testing Program there in 1994, and has coordinated numerous observational studi…

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 of HD on youth, and provides some valuable insights on genetic testing. Dr. Nance has some great stories to…

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, co-Director of the UAB School of Medicine Medical Student Neuroscience Module, Board of Trustee Member for …

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 research projects and clinical trials at UC Davis, working closely with advocacy groups in the greater Sacr…

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 trial for AMT-130 was starting. We spoke with Dr. Higgins about the development effort around this novel treat…

In this first-ever episode of the HD Insights Podcast Series from the Huntington Study Group, Dr. Daniel Claassen talks about his role as Director of the HD Center of Excellence at Vanderbilt University. We learn more about the current and future state of care in HD from Dr. Claassen. He also shares his interesting journey from music into neurology…