Huntington Disease program
Make an appointment
Please call (804) 662-9185 to schedule an appointment.
The Huntington Disease Program is an interdisciplinary program providing consultations to meet our patients’ individual needs. We strive to integrate expert clinical care with clinical research that advances knowledge in Huntington Disease (HD).
Our care team will create an individualized treatment plan for each patient, which will be shared with your primary physician and any local care providers as you prefer, to help coordinate ongoing follow-up. The HD Program will also provide you and your family the opportunity to participate in clinical research.
Dr. Claudia Testa, Program Director, is a neurologist with expertise in movement disorders, clinical care, and research. She will provide neurologic assessments. She is an investigator member of the Huntington Study Group (HSG) Executive Committee.
Dr. Adam Rosenblatt, Program Co-Director, also a long-standing HSG member, is a neuropsychiatrist with extensive experience in research and the treatment of HD. He will provide clinical assessments and psychiatric consultations.
Our care team
Our interdisciplinary care team also includes:
- Genetic counselor – providing genetic counseling and genetic testing, including for those who are pre-symptomatic
- Medical social worker – available to HD Program patients and families, connecting patients and families to necessary resources and supports in the community; providing psychotherapy, supportive counseling, or grief counseling; or helping a patient to expand and strengthen their network of social supports
- Physical therapist – evaluates gait and balance; fall prevention; exercise and activity
- Neuropsychologist – provides cognitive testing, to help map out individual patterns of change in thinking and memory; pragmatically address challenges that arise from changing in thinking in HD
- Nutritionist – healthy eating in HD; combating weight loss in HD
Through the VCU Medical Center network, our patients may also access speech therapy and swallowing evaluations, sleep neurology, or other specialists as needed.
Our clinical research programs are conducted in the same building as clinical appointments. We are happy to contact any interested HD families with research opportunity updates. We are developing programs for everyone: HD, at risk, family members! Our website is updated with studies as they become available. We are also happy to connect HD patients and families with regional and national research efforts.
For more information, contact Ginger Norris, MGC firstname.lastname@example.org or (804) 662-5300.
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.
What is a Genetic Counselor?
A genetic counselor is a specially trained health professional with experience in medical genetics and counseling. Genetic counselors provide information and support to individuals who have a genetic condition or a family history of a genetic condition. Genetic counselors can provide information about conditions, analyze inheritance patterns in families, discuss the chance to inherit a condition, and review available options with the family. Genetic counselors also serve as patient advocates, educators and resources for other health care professionals and for the general public. (Adapted from the National Society of Genetic Counselors)
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 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.
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.
Our program cares for people with adult onset or juvenile onset HD. Dr. Testa and Dr. Rosenblatt 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.
- Genetics Home Reference
- Genetics and Rare Diseases (sponsored by NIH)
- The Hereditary Disease Foundation
- Huntington’s Disease Society of America
- Huntington Disease Youth Organization