HD Insights Podcast

Episode 6 - Carolyn Gray, RN, CCRC (University of Kansas)

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 studies and clinical drug trials in movement disorders. In this episode, we talk about the role of the clinical coordinator in a research trial, typically the person a trial participant has the most direct contact with throughout a study. She shares her experiences from working on clinical drug studies, the efforts and responsibilities of the coordinator, and what participants can expect during their trial visits to the research center. In 2017, Carolyn received the HSG Outstanding Coordinator Award.

Episode 5 - Dr. Martha Nance (Hennepin County Medical Center - Minneapolis)

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 share, and this is a must-listen to kick off HSG 2019 week in Sacramento, as she serves as the chair of the Huntington Study Group's Family Education Committee.

Episode 4 - Dr. Victor Sung (UAB)

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 HDSA, and has served as Site Investigator for multiple clinical trials conducted by the Huntington Study Group through the UAB research site. Dr. Sung shared his thoughts on the evolution of HD treatments, his experiences working with HD patients, and his enthusiasm about the future potential for treatments currently in development. 

Episode 3 - Dr. Vicki Wheelock (UC Davis)

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 Sacramento and Northern California area, engaging with families and youth impacted by HD, to helping spread clinical knowledge about HD beyond our borders, Dr. Wheelock brings her passion to this podcast. We also talk about her role in helping plan for the HSG annual Family Day event as part of the annual meeting. This year, UC Davis serves as the HSG host site for this free event on Saturday, November 9, 2019 geared specifically for patients, families and caregivers. For additional information and to register for Family Day at HSG 2019: Navigating HD, visit https://huntingtonstudygroup.org/hsg2019-familyday/

Episode 2 - Dr. Joseph Higgins

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 treatment for Huntington's disease, the reaction from the HD community, and his early career experiences in clinical research. Dr. Higgins shares some interesting stories about being activated for wartime duty while and the NIH, and a personal connection he has to George Huntington, the man who discovered and for whom HD is named after.

Episode 1 - Dr. Daniel Claassen

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 and HD, and that he may have already been surpassed at golf by his young son.