UNMC and its clinical partner, Nebraska Medicine, host the second annual Huntington’s Disease Patient and Caregiver Symposium on Friday.
Patients and caregivers from across Nebraska and the Midwest will gather at the Scott Conference Center, 6450 Pine St., on the University of Nebraska at Omaha campus to learn more about new advances and better ways to manage the disease.
This event is supported by The Huntington’s Disease Society of America, which has designated UNMC/Nebraska Medicine as one of its 39 Centers of Excellence. Vicki Wheelock, M.D., director of the HDSA Center of Excellence at the University of California Davis Medical Center, will be the keynote speaker.
“This is an exciting event for our patients,” said Amy Hellman, M.D., director of the HDSA Center of Excellence at Nebraska Medicine and assistant professor, UNMC Department of Neurological Sciences.
“This event allows our multidisciplinary team to share the very latest information with our patients,” she said. “But just as importantly, it gives our patients and their caregivers the opportunity to come together as a community and share support.”
Diego Torres-Russotto, M.D., associate professor of neurological sciences at UNMC/Nebraska Medicine, stressed that there is hope for Huntington’s disease sufferers.
“We know the gene that goes awry to cause Huntington’s disease,” Dr. Torres-Russotto said. “We are getting closer to finding an answer. I’m confident that we will find a cure in my lifetime.”
The HDSA Center of Excellence at Nebraska Medicine draws patients regionally from western Iowa, South Dakota, Kansas and Wyoming.
Huntington’s disease is a genetic neurological disorder characterized by abnormal body movements and a lack of coordination. It also affects a number of mental abilities and some aspects of behavior.
In 1993, the gene causing HD was found. It was one of the first inherited genetic disorders for which an accurate test could be performed.
Because of this, and because Huntington’s has aspects applicable to other neurological disorders such as Alzheimer’s disease, it has been extensively researched since then. The gene causing the disorder is dominant and may, therefore, be inherited from a single parent.
There is currently no cure, so symptoms are managed with a range of medications and supportive services.
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