In recognition of collaboration with health care teams throughout the state, the movement disorders and neurodegenerative diseases clinic at UTHealth Neurosciences was designated a regional Center of Excellence (COE) by the Huntington’s Disease Society of America (HDSA), the only one in Texas and one of just four Level 1 COEs in the country. UTHealth Neurosciences is the clinical practice of The University of Texas Health Science Center at Houston (UTHealth).
Huntington’s disease (HD) is a fatal, inherited neurodegenerative disease that destroys nerve cells in the brain and usually strikes people in their 30s or 40s. It causes involuntary movements, immobility, cognitive decline, and psychiatric symptoms such as anxiety, irritability, and depression. Parents have a 50% chance of passing the gene defect on to their children.
As a Level 1 HDSA COE, the multidisciplinary UTHealth Neurosciences HD clinic collaborates with several clinics outside of Houston including Covenant Medical Group in Lubbock, Texas Movement Disorder Specialists in Waco and Temple, and The University of Texas Health Science Center at San Antonio to expand HD-specific care throughout Texas.
“Everyone wins when we are able to partner and collaborate like this,” said Erin Furr Stimming, MD, associate professor of neurology at McGovern Medical School at UTHealth and director of the clinic. “This allows us to reach more HD families,” she said.
The clinic initially received a Level 3 HDSA COE designation in 2016 based on the variety of services offered to patients including a neurologist, psychiatrist, neuropsychologist, allied health professionals, and a genetic counselor. As a result of the continued growth and collaboration with clinics outside of Houston, the clinic received the regional designation this year. The mission is to provide exceptional care to patients and families struggling with Huntington’s disease throughout Texas.
“All of our specialists at the UTHealth Neurosciences HDSA Center of Excellence have experience with Huntington’s disease. Our patients know that that no matter who they interact with while they are at the clinic, it will be with someone who understands HD, someone can empathize with what they are going through and strategize about an effective treatment plan,” Furr Stimming said.
In addition to providing treatment to those already living with Huntington’s disease, the center also provides predictive genetic testing to determine if someone has the HD mutation that will develop into the disease in the future. “Because of the mode of inheritance, HD really is a family disease,” Furr Stimming said. “Importantly, we remind our patients that their journeys can be different than their parents’ journeys. We have effective symptomatic medications and there are promising disease-modifying trials currently underway.”
Approximately 40,000 people in the U.S. are living with Huntington’s disease and over 200,000 are at risk of developing the condition, according to the National Organization for Rare Disorders.
The center is currently involved in several research studies related to Huntington’s disease, including clinical trials researching ways to modify disease progression, in order to help delay the onset of symptoms.
Efforts are underway to raise awareness and educate law enforcement officers and staff at long-term care facilities about the symptoms of Huntington’s disease. “Not enough people are familiar with Huntington’s disease. It is a rare disease and therefore, individuals might not know how to interact with someone who has the disease, but we are working to change that,” Furr Stimming said.
Furr Stimming is excited about the future of the center, especially with the new designation within the region.
“I am constantly inspired by our patients and am passionate about helping them fight this horrific disease, so for me this new designation means we are able to do more of that,” she said. “We are able to expand our advocacy, care, and research even further.”
To contact the clinic, call 832-325-7080.