For families of children with a rare genetic condition, receiving a diagnosis and compassionate care feels like a life jacket after drowning in uncertainty. Providers in a specialized UTHealth Houston pediatric program deliver this comprehensive, research-backed approach, which has recently received recognition as a Center of Excellence.
The NBIA disorders program at UTHealth Houston earned a Center of Excellence designation from the Neurodegeneration with Brain Iron Accumulation (NBIA) Disorders Association. As the fifth recipient of this prestigious recognition since 2022, it honors the team’s approach to caring for patients with NBIA disorders — rare genetic conditions that affect movement and neurological function.
Some of the program’s patients and their families attended a celebration in December 2025 as NBIA president Amber Denton presented the team with the Center of Excellence award plaque. Special guests included professors emeriti Ian Butler, MD, and Pedro Mancias, MD, who began seeing these patients years ago.
Making a difference for NBIA patients
For Nivedita Thakur, MD, a pediatric movement disorders neurologist at UT Physicians Pediatric Specialists – Texas Medical Center, the recognition represents years of dedication that began during her training at UTHealth Houston.
“When I was training here with Dr. Butler and Dr. Mancias, we were starting to see patients diagnosed with these conditions,” said Thakur, an associate professor in the Department of Pediatrics at McGovern Medical School at UTHealth Houston. “There wasn’t a lot of information available, and families were struggling to understand what it meant for their child.”
Thakur was a founding team member of a similar clinic at The Children’s Hospital of Philadelphia. She returned to Houston in August 2024 with a clear mission: create a team that could provide the same level of comprehensive care while advancing research to better understand these disorders. Within a year, they achieved that goal and formally applied for the Center of Excellence designation.
Recently, Thakur also was invited to join NBIA’s Scientific and Medical Advisory Board for her passion, expertise, and dedication to advancing research and care for NBIA patients. Thakur is also co-director of the Pediatric Movement Disorders Center and the Center for the Treatment of Pediatric Neurologic and Neurodegenerative Disease.
Two patient families who attended the recognition ceremony have been champions for the program. Conner Ruchirushkul’s mother encouraged the team to pursue the designation. After Conner’s diagnosis, his dad left his IT career and changed paths to nursing. Ashley Xiloj’s family also attended. This family has benefited from the program’s specialized expertise, including deep brain stimulation therapy.
“These families believed in having a place that listened to them from the beginning and helped figure out their child’s diagnosis,” Thakur said. “Being able to get that diagnosis and have a team working to care for their child means everything.”
Partnering for life
This recognition reflects the program’s commitment to both immediate medical needs and long-term care planning. Pediatric and adult providers work closely with families to ensure smooth transitions as patients grow. This collaborative approach — providing care throughout a patient’s lifespan — is what makes UTHealth Houston and UT Physicians unique.
“For families with genetic conditions, having everything under one institution that can care for patients throughout their life is so important,” Thakur said.
The program also offers advanced treatment options that aren’t widely available. Thakur works with pediatric neurosurgeon Manish Shah, MD, to provide deep brain stimulation therapy, which can significantly improve quality of life when implemented at the right time. Shah is co-director of the NBIA disorders program at UTHealth Houston.
“We believe deep brain stimulation in pediatrics is underutilized,” Thakur said. “It’s about having the right timing and a team that families can trust.”
Value of the designation
NBIA’s Center of Excellence initiative provides a network that families can access to discover clinicians and clinical study opportunities. For families across the South who travel to Houston for specialized care, the designation confirms what they’ve experienced firsthand.
“This distinction tells us we’re being recognized not only for our clinical efforts but also for our research efforts,” Thakur said. “Families look for the Centers of Excellence, knowing they’ll get the best clinical care and potentially leading-edge research where physicians are dedicated to both.”
