Huntington's Disease Program

The Huntington Disease (HD) program has been named a Center of Excellence by the Huntington's Disease Society of America. Our program is one of 29 selected nationwide for this prestigious designation, reserved for programs committed to collaborative, multidisciplinary care for HD affected families.

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

What is Huntington’s disease?

Huntington Disease 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. We 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 HD

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 virginia.norris@vcuhealth.org or (804) 627-1398.

If you do not have health insurance and worry that you may not be able to pay in full for your care, we may be able to help with financial assistance.

Our team

Dr. Stephanie Bissonnette, D.O., MPH, Program Co-Director 

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 a discussion of genetic testing results and pre-symptomatic testing for HD. She is also a member of the HSG.

Clinical research

Our clinical research programs are conducted in the same building as clinical appointments. Learn more about our currently enrolling studies.

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, contact Ginger Norris, MGC vwnorris@vcu.edu or (804) 662-5307.

HD resources

• Genetics Home Reference
• Genetics and Rare Diseases (sponsored by NIH)
• The Hereditary Disease Foundation
• HD Buzz - research news in plain English
• Huntington's Disease Lighthouse Family
• HD Reach
• Huntington's Disease Society of America
• Huntington's Outreach Project for Education, at Stanford
• Huntington's Disease Youth Organization
• Richmond Metro Huntington Disease Support Group information

Make an appointment

Please call the HD Program Coordinator at (804) 360-4669 to schedule an appointment.