HD Insights Podcast

Episode 16 - Dr. Ira Shoulson (Memories of Venezuela)

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 be part of that project led by Dr. Nancy Wexler. Dr. Shoulson has had a prominent role in HD research throughout the years. He is a co-founder of the Huntington Study Group, and was part of the team that developed the Unified Huntington’s Disease Ratings Scale, or UHDRS. This is also the first episode among others planned that takes a deeper dive into some of the disparities that impact access to quality HD care. In this instance, for the people in this area of Venezuela, the geographic and severe socio economic disparities that isolated them from the rest of the country.

Episode 15 - Dr. Lauren Byrne (UCL)

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-CSF study, which has been evaluating mutant huntingtin and neurofilament light. Dr. Byrne is a Research Fellow at the Huntington’s Disease Centre within the Institute of Neurology, University College London. Her passion to fight HD comes from her personal experience being from an HD family. She recently became the 2019 winner of the prestigious HDSA Berman-Topper Postdoctoral Research fellowship, and also joined the Board of the Huntington's Disease Youth Organization (HDYO). The pre-print version of the HD-CSF study can be viewed for free by visiting the following link - https://www.medrxiv.org/content/10.1101/2020.03.31.20045260v1

Episode 14 - Dr. Bruce Compas (Stress and Families Coping with Chronic Illness)

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 illnesses. Stress can be significantly magnified for HD families and caregivers, which makes the research and science behind it all the more important to understand and be aware of. Dr. Compas joined the HD Insights Podcast to help provide a sense of connection during the current pandemic, and to share strategies related to stress that may be helpful for members of the Huntington disease community.

Episode 13 - Dr. Adam Vogel

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 recognize, describe and treat communication and swallowing deficits in people with progressive neurological disorders, including Huntington’s disease and Parkinson’s disease. His platform presentation, "Motor speech phenotype of Huntington’s disease: A clinical biomarker in the premanifest phase", was featured at the Huntington Study Group annual meeting in November 2019. Dr. Vogel has co-authored more than 140 publications and talks about the importance speech in predicting the onset of HD symptoms.

Episode 12 - Chandler Swope (HDYO)

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 American HD Youth Camp. She is a dedicated and compassionate advocate for families and is experienced with helping young people address family trauma and crisis. We asked Chandler to join the podcast to share perspectives on helping people cope with stress, and strategies to still feel a sense of connection despite the limitations of social distancing, especially for HD families and youth during the COVID-19 global pandemic. Plus we get learn more about her background, including how she started with and the work she does through HDYO.

Episode 11 - Dr. Mary Edmondson

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 a local HDSA chapter, and was a founder of the North Carolina-base advocacy group HD Reach. Dr. Edmondson currently serves as Chair of the Huntington Study Group Provider Education Committee, and has been pivotal in developing and advancing the CME4HD curriculum for health care providers. Join us as she shares her story, including meeting some of the preeminent names in HD research that helped provide the push she needed to kickstart her career as an HD advocate. And with current events centered around COVID-19, Dr. Edmondson shares her thoughts for families and caregivers on coping with additional stresses they might now be experiencing.

Episode 10 - Physical Therapy's Role in Huntington's Disease

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 incorporating physical therapy into a patient's and caregiver's routine.

Episode 9 - Dr. Andrew Feigin (Huntington Study Group Chair)

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 Venezuela Collaborative Research Group, which isolated the HD gene 25 years ago. In this episode, Dr. Feigin shares what the experience in Venezuela was like, his tenure at North Shore University Hospital on Long Island setting up a Huntington's disease clinic, and current initiatives he's leading with the Huntington Study Group. We also get an update on the SIGNAL trial from Dr. Feigin, who serves as the Principal Investigator on that trial. 

To learn more about the Huntington Study Group and their current clinical trials and research, visit www.huntingtonstudygroup.org

Episode 8 - Catherine Martin (HDYO)

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 young people impacted by HD. For the past 20 years, she has put her time, efforts, and passion to helping families and youth in our HD community by leveraging the experienced she gained as a teenage caregiver herself. Her family was instrumental in helping start the Scottish Huntington's Association. Cat shares some fascinating insights on how her home town came together for her family and other HD families, why it is important for caregivers to make time for themselves, and how the global view about how to talk to youth about HD has changed in the past decade. Cat also talks about the 1st International Young Adults Conference for 18-35 year olds impacted by Huntington’s Disease, in Glasgow, Scotland in May 2020. If you're interested in learning more, visit www.hdyo.org or http://hdyocongress.org. 

Episode 7 - Ken Serbin (aka Gene Veritas)

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 blog and the Gene Veritas pseudonym. He also shared with us why he started out under the Gene Veritas name and how he ultimately came to the decision to reveal his true identity. Ken is a true champion for the HD community and uses his platform to help inform so many readers about the latest developments in HD research in a clear and concise manner. This is a fascinating, must-listen episode that we hope you enjoy!