Children with neuromuscular disease have access to the region’s largest team of specialists, latest treatments and clinical trials – right here in Richmond. Our patients often need coordinated care for their brain, heart, lung and bone health; therapy to address muscle strength, speech and mobility; and educational support to assist with school and learning. We are here to help your infant, child or teen succeed to be their best, and to join other patients and families in finding cures.
We’re proud to hold the following distinctions – not for the shiny awards – but for what these designations mean for our families:
Muscular Dystrophy Associate (MDA) Care Center: Recognition for expert clinical care and medical research
Parent Project Muscular Dystrophy (PPMD) Duchenne Care Center: Among an elite group of centers recognized for outstanding neuromuscular programs
Cure SMA Care Center Network: Expanding access to approved SMA treatments including Spinraza and Zolegensma
Thank you for allowing us to be your home for neuromuscular care.
We care for every neuromuscular disease, including:
Our experts are conducting numerous clinical trials in specific neuromuscular diseases, including Duchenne muscular dystrophy, myotonic dystrophy and SMA. Search for an active VCU study.
Visit clinicaltrials.gov to find studies nationwide.
We bring together experts from a variety of specialties to ensure the right doctors, therapists and other providers are caring for your child. The team collaborates to provide coordinated, individualized care for your child’s specific needs.
Our pediatric neuromuscular specialists, Dr. Amy Harper, Dr. Nicholas Johnson and Dr. Mathula Thangarajh guide the care team, beginning with conducting testing for accurate diagnosis and treatment planning. Testing may include nerve conduction tests, EMGs, MRIs, muscle biopsies and state-of-the-art genetic testing.
Because neuromuscular conditions can impact the heart, we test for deterioration, weakness and other impacts to the heart and cardiovascular system. Our team has specific expertise in non-invasive cardiac imaging, including MRI, echocardiography and EKG. We’re also researching 4-dimensional flow MRI and other innovative and kid-friendly ways to get the most precise and thorough images possible using the latest technology. We work with children and families to assess and manage changes that may occur over time.
Pulmonologists perform pulmonary function testing to assess the lungs and muscles involved in helping your child breathe efficiently and effectively and recommend tools or devices to help as needed. They also conduct sleep studies to address any issues or concerns with sleeping.
Our neurologists collaborate with orthopaedic surgeon Dr. Victoria Kuester for imaging to help with making an accurate diagnosis and care plan.
Dr. Mareen Thomas from our endocrinology team may conduct a DEXA scan, a special and precise type of x-ray, to measure bone mineral density. She works closely with dietitians for nutrition and treatment to enhance bone health.
Drs. Eugenio Monasterio and Olivier Rolin focus on cognitive skills and physical mobility to help your child maintain as much independence as possible.
From maintaining motion, mobility and independence to gaining new skills, speech and physical therapy are critical (and often fun!) parts of your child’s treatment. The therapists provide functional testing, equipment evaluations, feeding and language assessments, and assistive technology consultations. An orthotist (bracing) and equipment specialist also join our team clinics to help your child get the right equipment for their needs.
Our neuromuscular services extend beyond medical care. Our social worker can provide your family with psychosocial support and help coordinating early intervention referrals and financial assistance.
Our education liaison provides screening for academic and cognitive performance and can help coordinate 504/IEP accommodations with your child’s school.
Your child and family are unique. Our neuromuscular clinic coordinator will help to ensure that you receive all of the appropriate care and services, allowing us to best serve you.
Family support
Other families and organizations can offer support and guidance:
A new drug and our neuromuscular team changed her life.
