Alonso Zea Vera, MD, earned his medical degree from the Universidad Peruana Cayetano Heredia in Lima, Peru, and went on to complete his residency and fellowship at Children’s Hospital Medical Center in Cincinnati, Ohio. He recently joined Children’s Hospital of Philadelphia (CHOP) as Medical Director of the Movement Disorders Program, part of CHOP’s Neuroscience Center, and one of the few dedicated pediatric programs of its kind in the country.
In this Q&A, Dr. Zea Vera discusses recent innovations in the field of pediatric movement disorders, his vision for the program and what differentiates CHOP’s Advanced Tone Management Clinic from programs at other institutions.
What led you to focus on genetic movement disorders here at CHOP?
The field of movement disorders – specifically genetic movement disorders – is somewhat underdeveloped, and there is a lot we still don’t know. In children, there are two main areas of movement disorders, one being involuntary movements. These are classified based on their appearance but are frequently missed, go undiagnosed, or are labeled under broader terms such as cerebral palsy. The definition of cerebral palsy doesn’t exclude genetic diagnoses, but patients given this label are often assumed to have experienced a birth or prenatal injury. As a result, underlying genetic causes are often overlooked, though many patients, in fact, have one. Identifying a genetic cause can impact treatment approaches and has implications for other family members. Depending on the patient population, up to 20–30% may have an underlying genetic diagnosis.
A genetic diagnosis allows for more targeted therapy, including medications or treatments that may not otherwise be considered. For example, certain involuntary movements respond to caffeine, while others may benefit from interventions such as deep brain stimulation. Another major group of patients are those with ataxia, characterized by imbalance or coordination difficulties. These patients require significant support from a multidisciplinary team, including physical therapy, rehabilitation and speech therapy. Although treatments for this group have been more limited, there is active and ongoing research aimed at improving therapeutic options and outcomes.
CHOP has the capacity and resources to give the best care we can to kids with these disorders, including treatments like deep brain stimulation. Coming here to CHOP was a great opportunity, and this is a great team to work with.
What recent or upcoming innovations in the field are you most excited about?
Movement disorders can be hard to treat with medications alone, since the results are often limited. In the last five years, though, there’s been a lot of progress with neuromodulation techniques that let doctors pick up signals from specific parts of the brain and use them to better control movement. One of the main approaches is deep brain stimulation, a procedure that’s been around for a while and is mostly used in adults with Parkinson’s disease and tremors. It involves placing electrodes in an area of the brain called the basal ganglia and connecting them to a battery under the chest, which lets doctors adjust the level of stimulation. In children, it’s most often used for dystonia, where kids develop abnormal postures and stiffening that tend to worsen over time. At first, this treatment was thought to help only a small group of conditions, but more recently, doctors are finding that a wider range of genetic movement disorders may respond — and in some cases respond really well.
Another group of patients has hereditary spastic paraplegia, which causes progressive leg weakness and stiffness. Right now, there isn’t a good neuromodulation option for them, so researchers are exploring genetic therapies. The work is still early, and not every patient will be a good fit, but the number of conditions showing promise is growing. At the same time, new technology is changing the way deep brain stimulation is used. Doctors can now record brain signals in real time, which helps them fine-tune stimulation and figure out the best parameters for each patient. Advances in 3D brain mapping are also improving electrode placement and showing which brain regions are most effective to target, leading to more precise and effective treatment overall.
What is your vision for the future of the Movement Disorders Program at CHOP?
Children with movement disorders usually need care from a wide range of specialties. My goal is to create a large multidisciplinary clinic that can follow patients long-term, using tools like electrophysiology and neuromodulation not just for treatment, but also to improve diagnosis and guide therapy. Because these are rare conditions, most movement disorder programs are quite small. Building clinics that can serve as a real home for patients — which is often hard to find — would be the first step. From there, as we learn more, the idea would be to launch more research projects around these conditions.
What is unique about the Advanced Tone Management (ATM) Clinic at CHOP?
The main goal of the clinic is to evaluate kids with involuntary movements or tone abnormalities — patients with cerebral palsy, genetic movement disorders or conditions that affect daily life and don’t respond to medications. Families come in for a single-day visit and see a team that includes movement disorders specialists, pediatric rehab and physical medicine, physical therapy and occupational therapy. Together, the group works to figure out the best surgical intervention to improve both quality of life and function.
The clinic mainly focuses on three procedures. Selective dorsal rhizotomy is used for patients with spasticity, a type of tightness in the lower extremities. Baclofen pumps deliver medication directly to the spinal cord to reduce stiffness or involuntary movements. And deep brain stimulation (DBS) targets certain involuntary movements through electrical stimulation. In many cases, it’s not obvious which treatment will work best, since these procedures are usually managed by different subspecialties: DBS by movement disorders, baclofen pumps by rehab — so bringing everyone together helps combine expertise and guide decisions. The team works closely with neurosurgery, and once a good candidate is identified, surgeons can move quickly to evaluation and treatment. Just as important, the clinic follows patients closely to track outcomes, since there’s still limited data in pediatrics. Having all of these specialties in one place is rare, and it gives families access to a level of coordinated expertise that’s hard to find elsewhere.
What do you enjoy most about working with children with genetic movement disorders?
It’s inspiring to see kids just being kids, even while dealing with involuntary movements. They’re incredibly resilient: some may have significant dystonia, yet they still go about their day, playing and engaging like any other child.
Many patients come to clinic after years of living with these movements, almost accepting them as something they just have to endure. Unlike seizures, which have a clear beginning and end, involuntary movements are constant, so it’s easy for families to adapt without realizing how much of daily life is being affected. When we can identify the underlying cause, though, we’re able to offer more targeted treatments that can truly change lives. One of the biggest breakthroughs in recent years has been the growing use of neuromodulation in children. There’s increasing evidence that brain stimulation can reduce movements in conditions once thought untreatable. Families often don’t realize these options exist, so part of our work is also educating other providers about what’s possible now.
That makes it especially motivating, because if you can help control those movements, you can dramatically improve a child’s quality of life.
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Alonso Zea Vera, MD, earned his medical degree from the Universidad Peruana Cayetano Heredia in Lima, Peru, and went on to complete his residency and fellowship at Children’s Hospital Medical Center in Cincinnati, Ohio. He recently joined Children’s Hospital of Philadelphia (CHOP) as Medical Director of the Movement Disorders Program, part of CHOP’s Neuroscience Center, and one of the few dedicated pediatric programs of its kind in the country.
In this Q&A, Dr. Zea Vera discusses recent innovations in the field of pediatric movement disorders, his vision for the program and what differentiates CHOP’s Advanced Tone Management Clinic from programs at other institutions.
What led you to focus on genetic movement disorders here at CHOP?
The field of movement disorders – specifically genetic movement disorders – is somewhat underdeveloped, and there is a lot we still don’t know. In children, there are two main areas of movement disorders, one being involuntary movements. These are classified based on their appearance but are frequently missed, go undiagnosed, or are labeled under broader terms such as cerebral palsy. The definition of cerebral palsy doesn’t exclude genetic diagnoses, but patients given this label are often assumed to have experienced a birth or prenatal injury. As a result, underlying genetic causes are often overlooked, though many patients, in fact, have one. Identifying a genetic cause can impact treatment approaches and has implications for other family members. Depending on the patient population, up to 20–30% may have an underlying genetic diagnosis.
A genetic diagnosis allows for more targeted therapy, including medications or treatments that may not otherwise be considered. For example, certain involuntary movements respond to caffeine, while others may benefit from interventions such as deep brain stimulation. Another major group of patients are those with ataxia, characterized by imbalance or coordination difficulties. These patients require significant support from a multidisciplinary team, including physical therapy, rehabilitation and speech therapy. Although treatments for this group have been more limited, there is active and ongoing research aimed at improving therapeutic options and outcomes.
CHOP has the capacity and resources to give the best care we can to kids with these disorders, including treatments like deep brain stimulation. Coming here to CHOP was a great opportunity, and this is a great team to work with.
What recent or upcoming innovations in the field are you most excited about?
Movement disorders can be hard to treat with medications alone, since the results are often limited. In the last five years, though, there’s been a lot of progress with neuromodulation techniques that let doctors pick up signals from specific parts of the brain and use them to better control movement. One of the main approaches is deep brain stimulation, a procedure that’s been around for a while and is mostly used in adults with Parkinson’s disease and tremors. It involves placing electrodes in an area of the brain called the basal ganglia and connecting them to a battery under the chest, which lets doctors adjust the level of stimulation. In children, it’s most often used for dystonia, where kids develop abnormal postures and stiffening that tend to worsen over time. At first, this treatment was thought to help only a small group of conditions, but more recently, doctors are finding that a wider range of genetic movement disorders may respond — and in some cases respond really well.
Another group of patients has hereditary spastic paraplegia, which causes progressive leg weakness and stiffness. Right now, there isn’t a good neuromodulation option for them, so researchers are exploring genetic therapies. The work is still early, and not every patient will be a good fit, but the number of conditions showing promise is growing. At the same time, new technology is changing the way deep brain stimulation is used. Doctors can now record brain signals in real time, which helps them fine-tune stimulation and figure out the best parameters for each patient. Advances in 3D brain mapping are also improving electrode placement and showing which brain regions are most effective to target, leading to more precise and effective treatment overall.
What is your vision for the future of the Movement Disorders Program at CHOP?
Children with movement disorders usually need care from a wide range of specialties. My goal is to create a large multidisciplinary clinic that can follow patients long-term, using tools like electrophysiology and neuromodulation not just for treatment, but also to improve diagnosis and guide therapy. Because these are rare conditions, most movement disorder programs are quite small. Building clinics that can serve as a real home for patients — which is often hard to find — would be the first step. From there, as we learn more, the idea would be to launch more research projects around these conditions.
What is unique about the Advanced Tone Management (ATM) Clinic at CHOP?
The main goal of the clinic is to evaluate kids with involuntary movements or tone abnormalities — patients with cerebral palsy, genetic movement disorders or conditions that affect daily life and don’t respond to medications. Families come in for a single-day visit and see a team that includes movement disorders specialists, pediatric rehab and physical medicine, physical therapy and occupational therapy. Together, the group works to figure out the best surgical intervention to improve both quality of life and function.
The clinic mainly focuses on three procedures. Selective dorsal rhizotomy is used for patients with spasticity, a type of tightness in the lower extremities. Baclofen pumps deliver medication directly to the spinal cord to reduce stiffness or involuntary movements. And deep brain stimulation (DBS) targets certain involuntary movements through electrical stimulation. In many cases, it’s not obvious which treatment will work best, since these procedures are usually managed by different subspecialties: DBS by movement disorders, baclofen pumps by rehab — so bringing everyone together helps combine expertise and guide decisions. The team works closely with neurosurgery, and once a good candidate is identified, surgeons can move quickly to evaluation and treatment. Just as important, the clinic follows patients closely to track outcomes, since there’s still limited data in pediatrics. Having all of these specialties in one place is rare, and it gives families access to a level of coordinated expertise that’s hard to find elsewhere.
What do you enjoy most about working with children with genetic movement disorders?
It’s inspiring to see kids just being kids, even while dealing with involuntary movements. They’re incredibly resilient: some may have significant dystonia, yet they still go about their day, playing and engaging like any other child.
Many patients come to clinic after years of living with these movements, almost accepting them as something they just have to endure. Unlike seizures, which have a clear beginning and end, involuntary movements are constant, so it’s easy for families to adapt without realizing how much of daily life is being affected. When we can identify the underlying cause, though, we’re able to offer more targeted treatments that can truly change lives. One of the biggest breakthroughs in recent years has been the growing use of neuromodulation in children. There’s increasing evidence that brain stimulation can reduce movements in conditions once thought untreatable. Families often don’t realize these options exist, so part of our work is also educating other providers about what’s possible now.
That makes it especially motivating, because if you can help control those movements, you can dramatically improve a child’s quality of life.
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