Huntington’s disease is caused by the steady decay and death of nerve cells in the brain, affecting a person’s movement, behavior, thinking, and personality. Symptoms tend to emerge between the ages of 30 and 50.

Early on, symptoms are mild, but patients still lead independent lives. Over time, though, a gradual physical decline begins, and uncontrolled movements, called chorea, worsen. By the latter stages of the disease, a patient struggles to swallow and maintain their balance and will experience psychiatric issues.

Current treatments only lessen or ease these symptoms. Tailored care plans, like those crafted at IU’s center, help patients adapt to these changes. Ultimately, though, Huntington’s is fatal.

At IU School of Medicine, three physicians, a genetic counselor, and a social worker treat more than 250 patients, one of the largest groups nationally. That care starts with genetic testing and stretches through palliative care planning. The center also assists families in obtaining physical and speech therapy, nursing home placements, and estate planning.

As for research, the center emphasizes clinical trials as its focus. IU is a site for studies evaluating drugs that slow cognitive decline and minimize chorea. The center has also enrolled more than 70 patients in the largest observational study of patients with Huntington’s, a long-term effort by researchers to understand how it progresses.

Gifts to the Huntington’s Disease Center of Excellence Fund could make a difference in many important ways—including, but not limited to:

• Adding a research coordinator: These individuals would evaluate whether patients meet the qualification criteria for trials and help them enroll.
• Bolstering support staff: An additional social worker would improve response and follow-up to needs from families taking care of a loved one with Huntington’s disease.
• Funding lab research: Gifts could enable the center to support the cost of exploratory research in Huntington’s disease done in collaboration with basic scientists from other departments at the School of Medicine.

Thank you for your generous support!

Please note, the name and purpose of the fund displayed on this page constitute the authorized description of the fund by the Indiana University Foundation, Inc. Your gift supports the fund as described herein.

Gifts will be administered by the Indiana University Foundation, Inc. which represents Indiana University, including the IU School of Medicine. This is not a gift to Indiana University Health, and the Indiana University Health Foundation will not play a role in administering these accounts.