Huntington's Disease Education

This resource will help you to better understand Huntington’s Disease so you can share with others. Click the links to get started.

• Module 1: Natural History of HD and Introduction to Series

  Module 1: Natural History of HD and Introduction to Series (47:27) - Explores the stages and progression of Huntington’s disease, Presented by Sam Frank, MD

  Huntington's Disease is a progressive, inherited neurodegenerative disorder caused by a mutation in the HTT gene, leading to abnormal accumulation of huntingtin protein. Symptoms typically begin in mid-adulthood and include movement disorders, cognitive decline, and psychiatric issues, which gradually worsen over 10 to 25 years. As the disease advances, individuals lose independence and eventually require full-time care, with complications such as aspiration pneumonia or heart failure often leading to death.

  Additional educational content:

  2 Minute Neuroscience: Huntington’s disease video (2:09)

  Meet James: A brave voice in the battle against HD (1:25)

  What is Huntington’s disease? An Intro Video (5:29)
• Module 2: Genetic Factors in HD

  Module 2: Genetic Factors in HD (48:29) - Addresses heredity, CAG repeat and what that means as well as genetic testing for HD, Presented by Tom Bird, MD

  Huntington's Disease is caused by an autosomal dominant mutation in the HTT gene, specifically an expanded CAG trinucleotide repeat. Individuals with more than 39 CAG repeats will develop the disease, while those with 36–39 repeats may or may not show symptoms. Each child of an affected parent has a 50% chance of inheriting the mutation, making family history a key risk factor.

  Additional educational content:

  Living With HD, An ABC News Special (15:54)

  2-Minute Neuroscience: Huntington's Disease (2:00)
• Module 3: Special Issues: The Prodrome of HD

  Module 3: Special Issues: The Prodrome of HD (56:56) - Describers the early signs of HD prior to motor diagnosis, Presented by Jane Paulsen, PhD

  The prodrome of Huntington's Disease refers to the early, subtle changes that occur years before a formal diagnosis, often including mood swings, irritability, depression, and minor cognitive or motor impairments. These early symptoms may be mistaken for common mental health issues, making early recognition challenging. Identifying the prodrome is critical for timely support, monitoring, and potential future treatments aimed at slowing disease progression.

  Additional educational content:

  Huntington's Disease - From causes to treatments (3:46)
• Module 4: Cognitive Features of HD

  Module 4: Cognitive Features of HD (46:08) - How cognition is impacted by Huntington’s disease, Presented by Jane Paulsen, PhD

  Cognitive decline in Huntington's Disease typically begins with subtle changes in executive functions, such as difficulty with planning, organizing, and multitasking. As the disease progresses, memory, attention, and problem-solving abilities deteriorate, often leading to dementia in later stages. These cognitive impairments significantly impact daily functioning and contribute to loss of independence over time.

  Additional educational content:

  • A Family's life journey with HD (3:11)

  Neurology of HD (20:51)
• Module 5: Psychiatric Syndromes in Huntington’s Disease – Assessment and Management

  Module 5: Psychiatric Syndromes in Huntington’s Disease – Assessment and Management (45:56) - Describes the psychiatric syndromes associated with HD and treatment options, Presented by Adam Rosenblatt, MD

  Psychiatric symptoms are common in Huntington's Disease and can appear early, often before motor symptoms, with depression, anxiety, and irritability being among the most frequent. As the disease progresses, individuals may experience apathy, obsessive-compulsive behaviors, and, in some cases, psychosis or suicidal thoughts. These psychiatric syndromes greatly affect quality of life and require comprehensive management alongside motor and cognitive symptoms.

  Additional educational content:

  Disease Management and Research (5:19)
• Module 6: Motor Dysfunction and Neurological Care

  Module 6: Motor Dysfunction and Neurological Care (20:26) - Addresses the movement disorders associated with HD and treatment options, Presented by Vicki Wheelock, MD

  Motor dysfunction in Huntington's Disease typically begins with subtle involuntary movements (chorea), poor coordination, and muscle stiffness, which gradually progress to severe impairment of voluntary movement and balance. As mobility declines, patients often require assistive devices and support with daily activities to maintain safety and function. Neurological care for HD patients involves a multidisciplinary approach, including physical therapy, medication management, and regular assessments to address evolving motor symptoms and optimize quality of life.

  Additional educational content:

  Huntington’s disease treatments (2:11)
• Module 7: Juvenile HD

  Module 7: Juvenile HD (34:07) - Describes diagnosis, treatment and care for children affected by the juvenile version of HD, Presented by Martha Nance, MD

  Juvenile Huntington's Disease (JHD) is a rare form of HD that begins before age 20 and often presents with stiffness, slowed movements, learning difficulties, and seizures rather than the typical adult-onset chorea. JHD progresses more rapidly than adult-onset HD and requires specialized medical and educational support tailored to children and adolescents.

  Additional educational content:

  Living with Juvenile Huntington's Disease (9:43)
• Module 8: Team Based Care For HD – From the Beginning to the End

  Module 8: Team Based Care For HD – From the Beginning to the End (37:00) - Discusses the benefits of a team-based care approach to improving the quality of life and overall care of the person with HD, Presented by Martha Nance, MD

   Additional educational content:

  • Huntington's Disease Society of America - Iowa Chapter

  HDSA Centers of Excellence (2:04)

  University of Iowa Huntington's Disease Center of Excellence (0:49)