HD Insights Podcast

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.

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. 

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. 

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.

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 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/.

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. 

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 being conducted at sites across the U.S. and Canada. Additional information about the study can be found at www.KINECT-HD.org. 

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 with the organization. Her story made for a powerfully moving conversation that we are incredibly fortunate to be able to share with you. Katie also shares more about upcoming Help4HD events such as their virtual HD HIPE sessions in July and August, and the training resources they provide to aid first responders or law enforcement who may encounter someone with HD. For more information on their support services, visit www.help4hd.org.

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 the podcast. FACTOR-H is a not-for-profit humanitarian foundation founded in 2012 to facilitate humanitarian and medical aid to diminish the suffering of local communities affected by Huntington’s disease in Latin America. If you are interested in learning more about the work that FACTOR-H does, visit their website - https://factor-h.org 

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 gene. As a pediatric neurologist, Dr. Dure brings a slightly different perspective on his Venezuela experience. Additionally, he and Dr. Claassen have a more in-depth conversation about the clinical impacts of HD on young people.

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.

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

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.

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.

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.

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.

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.

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

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. 

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!

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.

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.

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. 

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/

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.

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.