When Civitan Magazine profiled Dr. Craig Powell in the May 2018 issue, it was the first opportunity for most Civitans to learn about the man who has been tapped to lead the Civitan International Research Center (CIRC).
Dr. Powell comes to Civitan from the University of Texas Southwestern Medical Center’s Department of Neurology and Neurotherapeutics where he was a Distinguished Professor in Neurology. Now in his first month as Director of the CIRC, Dr. Powell recently visited Civitan headquarters to share his thoughts on the center and on the future of research.
About the Civitan International Research Center
Civitan Magazine: Now that you are on board, what did you know about Civitan and the research center before?
Dr. Powell: “I’d heard about the Civitan International Research Center previously in autism and intellectual disability research circles. It’s known around the world, especially to scientists and researchers.
Also, I knew the work of Alan Percy in Rett syndrome. I was training right down the hall from Huda Zoghbi at Baylor College of Medicne where the gene was discovered. He and Huda Zoghbi worked together to discover the gene.”
Civitan Magazine: The CIRC has earned much recognition because of Dr. Percy’s work in Rett syndrome. What is the primary focus of your own research?
Dr. Powell: “My personal lab research is focused on autism and intellectual disabilities. What we are trying to find out is if you have 20,000 genes going from all sorts of traits and characteristics—from height to eye color and everything—how do you take one little piece of that gene and change the chemistry of it from one molecule to the other and how does that cause these major transformations in brain function. They don’t have a lot of obvious changes in what it looks like but subtle changes at the molecular level. That just fascinates me.
We think one of the keys is disruptions between neurons in the brain. That’s really where the rubber meets the road. How does that happen? How can we fix it? And does that help with the model systems and ultimately does that help families and their kids?”
About the future of research
Civitan Magazine: Where are we going? What excites you about the next 10 years in the field of research?
Dr. Powell: “I think we are going to have medical drug therapies to treat intellectual and developmental disabilities, and autism. Not as one entity. I think we will have drugs that target specific pathways and specific causes.
The other exciting avenue of research, that may be a little more than a decade away, is gene therapy. We, the research field, have now treated a neurological illness that happens in childhood that uniformly killed patients by the time they were five to 10 years old. The treatment has made them live beyond that age and walk, talk, interact and play and it’s nothing short of a miracle. It’s expensive and it has to be given into the spinal fluid but it’s a one or two time treatment and that’s it. If we can translate that kind of treatment into brain diseases that are genetically based, that would be transformative.
With gene therapy, you are actually inserting DNA into the cell and it changes what is being made inside the cell. The trick is delivering it and getting it to the right place. It’s like going in and editing the words on a page after the book has already been printed.
Imagine printing a row of stamps and some of the images are upside down. On a computer you can change an image. On Facebook you can flip it, download it and change it but on the paper you can’t. This is revolutionary.”
Civitan Magazine: Civitan also funds work at the Sparks Clinics. Do you see yourself seeing patients in that setting?
Dr. Powell: “It’s not like when I see patients in a hospital setting where I treat them and they get well and go home. That’s very satisfying. When you’re really treating patients in the clinic, they have needs every day of the week. You can’t just come in and out and go back to the lab.
So, I’ve avoided seeing patients with autism and intellectual disabilities because what we do for them is so time intensive, and so difficult. You’re referring them to services, trying to manage their school programs, trying to integrate with a lot of different providers to come up with the best plan for behavioral therapy, planning how to transition these kids into the occupational world, teach them living skills, and that can’t be done with a simple prescription and hand it to the patient and they are on their way. It’s time intensive.
I think it is better for me to focus on the lab but, I will say, we have started studying patients to try to see how different genetic causes of autism and intellectual disabilities differ from other causes. There are different mutations that cause different things and we call them all autism but they should be treated differently.
Civitan Magazine: There are so many different variations lumped into that spectrum of diagnosis. Do you think it is more prevalent now or just easier to recognize?
Dr. Powell: “There’s no doubt that the increase in the prevalence of autism is due to expanding the diagnosis, expanding awareness, and education. And, if you have a diagnosis if autism you qualify for certain services and if you have a diagnosis of an intellectual disability you qualify for a different set of services. That accounts for most of it. There’s still a lot of debate about the rest of the increase. I don’t think we understand, fully, how significant that increase has been. There’s too many factors muddying the waters.
What we used to know is 90% of kids with autism had intellectual disabilities. Now it is only 40%. Does that mean there is less intellectual disability in autism? No. It means we’re diagnosing more as autism than we used to. But, there is evidence that that pool of kids with intellectual disabilities is getting bigger. Are more being diagnosed in order to get different services or if there is more autism what is causing that?
We know there is an association between autism and air polution and an association with certain pesticides. There are other associations that are very rare. There are kids with environmental factors. There is an association with infections during pregnancy and with premature births. It could be that medicine is allowing more premature babies to survive than before. There are a lot of complex factors— none of which explain this dramatic increase we have seen.
We now have drugs that can improve interaction with others and improves seizures. About 30% of children with autism also have seizures.
Parents should look for early signs, such as delayed speech development, lack of eye contact, playing more with things instead of people, and consult their doctor if they are worried. Early therapy is best. One problem is, there are not enough care providers.
Civitan Magazine: What can we do, as Civitans, to increase awareness for these needs?
Dr. Powell: “All of the Civitans and scientists in the world may not be able to solve that. But we need programs like the Civitan Sparks Lend program which is training the next generation of doctors, physical therapists, speech therapists, and all the different disciplines that need to come together to treat these kids.
The hope for the future is research. Civitan International Research Center is providing that, disseminating that, as fast as the public will allow us to do so. But I think we have to be careful. It’s a long process and we don’t want to mislead people by appearing to say if you invest we will have a cure in a few months or in a few years. Research is a long term investment.