“The brain is very complex, understanding its function or dysfunction takes more than a geneticist or a neurophysiologist or a pathologist or a mathematician. So we wanted to create a new structure that would allow all these people to easily work together and be successful.”
Zoghbi says 300 million children worldwide suffer from neurological diseases. Diseases like epilepsy, autism, and cerebral palsy.
“They keep a child in a state that requires constant need and not really living a full life for decades. Most diseases you treat them and that will be the end, but in these diseases the children sit there for ten, 20, 50, 70 years. That’s why it’s a pressing area of need. And we now know from studies in animal models that these diseases, many of them, are reversible, so we really have to do something.”
Elizabeth DeLuca and her daughter Caroline (on right) attend the ribbon-cutting for the new research institute. Caroline has a neurodegenerative disease and gets treatment at Texas Children’s Hospital.
Zoghbi is famous in neurology for discovering the genetic mutation responsible for Rett syndrome, which mostly affects girls.
“Children start life with normal skills for about a year to a year and a half, and then gradually lose every skill, and develop a symptom of every neurological disorder you’ve seen. If you’ve seen seizures, intellectual disabilities, tremors, obsessive compulsive behavior, anxiety, you have it. It’s all in that one disease. It’s a devastating disease. This is one of the many diseases studied at the institute.”
Elizabeth DeLuca brought her 13-year-old daughter Caroline to the ribbon cutting. Caroline has a neurodegenerative disease so rare it doesn’t have a name. Over the past year she has lost her ability to run and is now struggling to walk and swallow. But her mother says the research institute could help someday.
“I was filled with hope, if not for my child, at least for all the children coming along behind. I think once we start some clinical trials with some things they’ve got on tap. I think they’re going to be some dramatic breakthroughs. I’m guessing in the next five years, coming out of this building.”
Kevin Black, joined by son Colton, plays a song in memory of his daughter who died from complications of Rett syndrome, a pediatric neurological disease.
Kevin Black is the brother of country star Clint Black. His daughter died five years ago from Rett syndrome.
“I have spent many, many years walking the halls of the Texas Children’s Hospital. Sixteen of them to be exact .”
Black played a song in her memory with his son Colton.
The building cost $215 million and is named after the lead contributors, Jan and Dan Duncan. The institute will need to attract ongoing federal grants and donations to pay for research salaries and studies. From the KUHF Health Science and Technology Desk, I’m Carrie Feibel.