Huntington Disease - Virginia Commonwealth University

Huntington Disease program

The Huntington Disease (HD) program has been designated a Center of Excellence by the Huntington's Disease Society of America since 2015.

Our team of experienced interdisciplinary providers is dedicated to providing consultations and ongoing care to meet our patients’ individual needs. We strive to integrate expert clinical care with clinical research to advance knowledge in HD.

The interdisciplinary HD clinic is held on the first Wednesday of every month at the Short Pump Pavilion building.

If you are interested in making an appointment, please call Brittany Gibson at: (804) 305-7451.

Directors

Matthew Barrett, MD, MSc, Program Director, is a neurologist with specialized expertise in Huntington Disease clinical care and research. He has spent 10 years caring for those with HD, and is passionate about finding better treatments, and ultimately a cure. He is a member of the Huntington Study Group (HSG) and an investigator for multiple clinical trials in HD.

Ginger Norris, MGC, Program Co-Director, is a genetic counselor with extensive experience in HD and HD research. She provides genetic counseling to patients and family members of those with HD. This includes discussion of genetic testing results and pre-symptomatic testing for HD. She is also a member of the HSG.

Our care team

Our interdisciplinary care team also includes the following team members:

A physical therapist who helps to improve a person’s conditioning, balance, coordination and motor skills.
An occupational therapist who provides tips and training to support the skills a person needs for daily living.
A speech and language pathologist who works to improve a person’s speech and swallowing.
A nutritionist/dietician who is available to provide information to improve a person’s nutritional intake.
A social worker who strives to support individuals and family with issues involving work, healthcare, finding community services, and long-term care.
A clinical neuropsychologist who examines a person’s cognitive abilities, mood, and quality of life.
A psychiatrist who works with individuals to improve any problems related to mood and other psychiatric symptoms associated with Huntington’s disease.

Through the VCU Medical Center network, our patients may also access other specialists as needed.

Support Group

If you are interested in learning more about our regional HD support group, please contact Vondra Harrell at Vondra.Harrell@vcuhealth.org or call (804) 364-1115.

Clinical Research

We have an active research program and are a site for multiple clinical trials at any given time. We are currently an active site for Enroll-HD. Clinical research visits are conducted at the Short Pump Pavilion or the Clinical Research Services Unit at VCU Medical Center.

We are happy to contact any interested HD families with research opportunity updates. We are developing programs for everyone: those with HD, at risk, and family members! Join our mailing list to learn of the latest opportunities.

For more information about our clinical research program, please contact Heather Ward at Heather.Ward@vcuhealth.org or (804) 382-0076.

What is Huntington Disease?

Huntington Disease (HD) is an inherited neurodegenerative disease. HD is most often thought of as a movement disorder, but it also causes emotional and behavioral changes, and cognitive decline. The symptoms associated with HD usually become more severe over time. Currently there is not a cure for HD, but there are medications to manage the symptoms. There are also many other ways to improve a person’s independence and quality of life.

Is Huntington Disease Inherited?

Yes. HD is caused by a change in a gene and it is passed from a parent to a child. Every child of an individual who has HD has a 50% chance of inheriting the gene that causes HD and a 50% chance of not inheriting the gene. HD affects both men and women and all ethnicities. For people considering learning their personal chance of inheriting HD gene, a consultation with a genetic counselor will be helpful. Learn more about genetic counseling.

HD Care: At risk, pre-symptomatic, symptomatic

Information, clinical care, and research needs differ across the spectrum of HD. Our team will work with you and your family to find the right fit for your needs.

At risk:
At risk individuals may connect with the HD Program through genetic counseling. Genetic counseling does not obligate a person to go forward with genetic testing. If the individual chooses, our program can provide genetic testing. Information on family planning, HD advocacy, and HD research are examples of areas that may be relevant for someone living at risk for HD.

Pre-symptomatic:
For someone with the HD gene mutation who is pre-symptomatic, a neurological assessment may provide a helpful baseline, along with further assessments by psychiatry or neuropsychology if additional information is needed. Some pre-symptomatic individuals may not require clinical evaluation, such as those individuals focused on gathering information for family members, or finding ways to participate in research.

Symptomatic:
Our program cares for people with adult onset or juvenile onset HD. Dr. Barrett will provide initial care assessments. Ongoing follow-up care will be provided as needed with consults from interdisciplinary team members to meet individual needs. Research and education about HD for family members and the community are key information areas for symptomatic individuals.

Costs

For patients interested in self-pay options, the HD Program Coordinator can provide current cost information for appointments with the neurologist, genetic counseling and/or testing. For more information, contact Ginger Norris, MGC at virginia.norris@vcuhealth.org or (804) 627-1398.

If a patient needs financial assistance, please contact Virginia Coordinated Care Program (VCC) at (804) 628-0600 for screening. VCC needs to be approved before the appointment. Please note VCC does not cover genetic testing.

Parkinson's and Movement Disorders Center