Neuromuscular Program

Neuromuscular Program Neuromuscular Program Neuromuscular Care Call Us Neuromuscular Care Central Florida (407) 650-7715 Northeast Florida (904) 697-3600 Contact Nemours Visit our contact page to find more contact information for each of our regions Make an Appointment Neuromuscular Care (800) 416-4441 Make an Appointment Neuromuscular Care Call Us Neuromuscular Care Delaware Valley (800) 416-4441 Central Florida (407) 650-7715 Northeast Florida (904) 697-3600 Contact Nemours Visit our contact page to find more contact information for each of our regions Make an Appointment Our Care Helping Kids With Neuromuscular Conditions Live Their Best Lives Nemours Children’s neuromuscular specialists empower children to live their best lives. Our program, certified by the Muscular Dystrophy Association (MDA), offers leading-edge treatments and complete care for kids and families. Your child’s care is led by experts who are part of leading pediatric neuroscience centers in Delaware and Florida . We partner with recognized orthopedic specialists, cardiologists, pulmonologists, physical medicine doctors and endocrinologists to care for children with complex conditions. Our team also conducts neuromuscular research. We develop life-changing devices that help kids move and treatments that help them live longer, and better. Our neuromuscular team specializes in a wide range of conditions, from Duchenne muscular dystrophy and spinal muscular atrophy (SMA) to various neuropathies and myopathies. We offer advanced therapies, including gene therapy and treatments for rare diseases, rehabilitation, nutrition counseling and more to help kids function their very best. At Nemours, you have access to all the support and care your family needs in one place. Three Leading Pediatric Neuroscience Centers Our neuroscience centers provide highly advanced, integrated medical services just for kids and teens with neurologic and neuromuscular conditions. Learn about our focused programs, advanced research, and leading care. Neuroscience Center, Delaware Valley Located in Wilmington, Delaware. Neuroscience Center, Central Florida Located in Orlando, Florida. Neuroscience Center, Northeast Florida Located in Jacksonville, Florida. Find Care at Nemours We have many pediatric neurologists and locations — find the care closest to you: Find a Doctor Find a Location “They all truly care and go above and beyond for her. As a parent, I feel peace of mind knowing that she is in good hands. They all listen to her and me.” Read Julieta’s Story "The clinicians are always asking how Liam is doing at home, at school, in social situations. They really try to get a complete picture of his health and well-being.” Read Liam’s Story "Through his treatment at Nemours and the advocacy of his parents, Luke's life looks like that of any other 10 year old." Read Luke’s Story one two three Leading Neuromuscular Care in Florida We want coming to Nemours to be a bright start in your child’s day. Our team personalizes care, touching nearly every aspect of your child’s life. We provide complete care at state-of-the art facilities at Nemours Children's Hospital, Florida in Orlando. We’re here from diagnosis, treatment and beyond. We’re the only MDA-approved program of its kind in Central Florida. Nemours is doing important research, studying neuromuscular disorders and offering access to clinical trials and treatments you can’t get everywhere. We offer the newest treatments for SMA , which have greatly improved the quality of life for kids. Nemours provides everything your child needs within the same system. You get expert care and support in one place. Meet Our Neuromuscular Specialists in Central Florida Our specialists are at the forefront of their fields. They work tirelessly to improve the quality of life for children and teens with neuromuscular disorders. Omer A. Abdul Hamid, MD Neurology (407) 650-7715 Primary Office Orlando, FL View Provider Profile Erin Baker, PT Physical Therapy (407) 650-7715 Primary Office Orlando, FL View Provider Profile Kelly Bell, RD Nutrition (407) 650-7715 Primary Office Orlando, FL View Provider Profile Rebekah Lee Dailidonis, ARNP Neurology (407) 650-7715 Primary Office Orlando, FL View Provider Profile Annette Gubert, LCSW Social Work View Provider Profile Sheryl Mann, RN, CPN Neuromuscular RN Coordinator Rulla Starr, MS Neuromuscular Program Coordinator Julie Wells, OTR Occupational Therapy (407) 650-7715 Primary Office Orlando, FL View Provider Profile Leading Neuromuscular Care in the Delaware Valley We want coming to Nemours to be a bright start in your child’s day. Our team personalizes care, touching nearly every aspect of your child’s life. We make care convenient. You can see us at our Nemours Children’s Hospital, Delaware, and several specialty care locations throughout the region. We’re doing important research, studying neuromuscular disorders and offering access to clinical trials and treatments you can’t get everywhere. We’re the only MDA-approved program of its kind in the state of Delaware. We’re also Parent Project Muscular Dystrophy (PPMD) certified as a Duchenne Care Center. We offer the newest treatments for SMA , which have greatly improved the quality of life for kids. Meet Our Neuromuscular Specialists in the Delaware Valley Our specialists are at the forefront of their fields. They work tirelessly to improve the quality of life for children and teens with neuromuscular disorders. Raina Carwell, MSW Social Work View Provider Profile Patrick C. Hanley, MD Endocrinology (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Robert A. Heinle, MD Pulmonology (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Manish Kumar, MD Neurology (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Sue Moyer Harasink, CGC Genetics (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Aryaz Sheybani, MD Cardiology Medical Director, Heart Transplant Program (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Eileen Shieh, MD Physical Medicine and Rehabilitation (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Takeshi Tsuda, MD Cardiology Director, Cardiac Rehabilitation & Fitness, Director, Cardio-Oncology Professor of Pediatrics at Sidney Kimmel Medical College, Thomas Jefferson University (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Leading Neuromuscular Care for Kids We want coming to Nemours to be a bright start in your child’s day. Our team personalizes care, touching nearly every aspect of your child’s life. Nemours neurologists care for kids with neuromuscular disorders at convenient locations throughout the Delaware Valley and Florida. Our neuromuscular programs are the only MDA-approved programs of their kind in the state of Delaware and in Central Florida. Nemours is doing important research, studying neuromuscular disorders and offering access to clinical trials and treatments you can’t get everywhere. We offer the newest treatments for SMA , which have greatly improved the quality of life for kids. Nemours offers everything your child needs within the same system. You get expert care and support in one place. Meet Our Neuromuscular Specialists Our specialists are at the forefront of their fields. They work tirelessly to improve the quality of life for children and teens with neuromuscular disorders. Raina Carwell, MSW Social Work View Provider Profile Patrick C. Hanley, MD Endocrinology (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Robert A. Heinle, MD Pulmonology (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Manish Kumar, MD Neurology (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Sue Moyer Harasink, CGC Genetics (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Aryaz Sheybani, MD Cardiology Medical Director, Heart Transplant Program (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Eileen Shieh, MD Physical Medicine and Rehabilitation (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Takeshi Tsuda, MD Cardiology Director, Cardiac Rehabilitation & Fitness, Director, Cardio-Oncology Professor of Pediatrics at Sidney Kimmel Medical College, Thomas Jefferson University (800) 416-4441 Primary Office Wilmington, DE View Provider Profile Omer A. Abdul Hamid, MD Neurology (407) 650-7715 Primary Office Orlando, FL View Provider Profile Erin Baker, PT Physical Therapy (407) 650-7715 Primary Office Orlando, FL View Provider Profile Kelly Bell, RD Nutrition (407) 650-7715 Primary Office Orlando, FL View Provider Profile Rebekah Lee Dailidonis, ARNP Neurology (407) 650-7715 Primary Office Orlando, FL View Provider Profile Annette Gubert, LCSW Social Work View Provider Profile Julie Wells, OTR Occupational Therapy (407) 650-7715 Primary Office Orlando, FL View Provider Profile Groundbreaking Duchenne Muscular Dystrophy Treatment in Florida Nemours Children’s Hospital, Florida is one of just three hospitals in the state to offer the revolutionary ELEVIDYS gene therapy for Duchenne muscular dystrophy. This therapy represents a ray of hope for our patient Jaxson and his family, and offers a brighter future for kids with this disease. Programs & Services Neuromuscular conditions range in type and severity. We work to understand your child’s signs and symptoms, like muscle weakness or developmental delays. Using a family-centered approach, we care for kids inside the landscape of family, seeing the whole picture. We know that these conditions have psychological and social impacts at both home and school. We create a care plan that considers every part of your child’s life. We offer many services for kids and teens living with neuromuscular conditions. Convenient appointments with multiple providers , often on the same day. Advanced diagnostics , including the latest imaging and muscle and nerve tests in state-of-the-art, kid-friendly facilities. Gait and motion analysis testing in Delaware Valley, the first pediatric lab of its kind. Multispecialty care with orthopedic and cardiology experts who have expertise working with kids with neuromuscular conditions. Genetic counseling services to help families understand the role genetics can play in certain neuromuscular diseases. Assistive technology services, which includes tools and devices that can help kids learn to speak, write, learn or move better. Onsite orthotics labs for convenient, customized mobility solutions. Seating and mobility equipment and training , where kids and families can find the right system and learn how to use it. Pain management and palliative care services from providers who know how neuromuscular disorders can affect a child. Physical and occupational therapy programs at convenient rehabilitation facilities. Support and services from a team of care coordinators, social workers, Child Life specialists and others who help your family navigate care, cope with a diagnosis and find resources in your community. Transition of care assistance , helping your teen find seamless neuromuscular care with adult specialists. Conditions & Treatments We see kids and teens for many problems that involve low muscle tone or muscle weakness. Below are some of the most common conditions we see. Don’t see a condition listed? Call us. Congenital Myopathies Duchenne Muscular Dystrophy Facioscapulohumeral Muscular Dystrophy (FSHD) Limb Girdle Muscular Dystrophies Myasthenia Gravis Peripheral Neuropathy Pompe Disease Spinal Muscular Atrophy (SMA) Muscular Dystrophy Peripheral Neuropathies Charcot-Marie-Tooth Disease Metabolic Myopathies Inflammatory Myopathies Motor Neuron Diseases Related Specialties & Programs Assistive Technology Behavioral Health Developmental Behavioral Pediatrics Endocrinology Gait & Motion Analysis Genetics Neurology Neuromuscular Cardiology Neuroscience Center, Central Florida Neuroscience Center, Delaware Valley Orthopedics Orthotics Pain Management Palliative Care Pulmonology Rehabilitation Medicine Wheelchair Clinic Participate in a Clinical Trial The neuromuscular research team at the Neuroscience Center in Delaware Valley is partnering with the Raphael Center for Neurorestoration at Thomas Jefferson University to develop the NuroSleeve. This wearable device can help children with muscular dystrophy and other conditions that cause arm weakness or paralysis. Learn more about the NuroSleeve trial. Convenient Follow-Up Appointments by Video We offer follow-up appointments through scheduled, live video visits. You can avoid waiting rooms and save travel time. Ask your doctor if this is an option for your family.