Lurie Children’s works with the Muscular Dystrophy Association (MDA) in a clinical partnership to improve the care of children living with neuromuscular diseases. MDA helps children who are affected by muscular dystrophy, spinal muscular atrophy, Charcot-Marie-Tooth disease and other neuromuscular diseases. MDA maintains a network of some 200 specialized clinics. Our affiliation with this nationally recognized organization will allow our patients and families to benefit from MDA’s extensive range of support services and resources, as well as a wide variety of high-quality educational materials.
Our multidisciplinary team is focused on providing family-centered care and offers families the opportunity to see multiple program experts during a single visit to the clinic. Having multiple experts observe a child’s movement and function during a single visit increases our ability to efficiently recommend and implement therapies, adaptive equipment and treatments to improve their function and well-being.
In our neurodiagnostic laboratory, special focus is given to developing a non-intrusive and child-friendly approach to testing. Testing includes motor and sensory nerve conduction studies, needle electromyography, single fiber electromyography, and quantitative sensory and autonomic testing. Evolving knowledge about neuromuscular disorders requires increasingly modern and sophisticated equipment in order to be effective at identifying specific neuromuscular disorders in children.
During an appointment at our clinic, a child will see knowledgeable healthcare specialists from a variety of disciplines during the same appointment. The clinic will be held several days each month. Visits can last between two to three hours to allow each child time to be seen by all the consultants necessary for their individualized treatment plan. Specialists that are available during clinic include a neurologist, a pulmonologist, an orthopedic surgeon, physical and occupational therapists, a nurse educator, a metabolic bone health pediatric nurse practitioner, a clinical nutritionist, orthotists, the MDA Healthcare Services Coordinator and a social worker. We can also coordinate appointments with cardiology and other disciplines if necessary.
The Mazza Foundation Neuromuscular Program research coordinator will also be present in the MDA clinic to provide information to families and facilitate participation in approved clinical research trials. We are part of several research consortia investigating different steroid regimens, heart medication and nutritional supplements to provide our families with an opportunity to participate in trials that may improve health for children living with neuromuscular conditions.
MDA Clinic Director Nancy L Kuntz, MD, is Attending Physician, Neurology; Medical Director, Mazza Foundation Neuromuscular Disorders Program; and Associate Professor of Pediatrics and Neurology at Northwestern University Feinberg School of Medicine. Dr. Kuntz is board-certified in Pediatrics, Neurology with special qualifications in Child Neurology, and Neurology with special qualifications in Neurodevelopmental Disabilities.
To make an appointment for the MDA Clinic at Lurie Children’s, please call 312.227.3550.
The MDA offers a wide variety of educational materials in English and in Spanish, MDA summer camp for kids from 6-18 years with neuromuscular diseases, adaptive equipment loan closet, and financial assistance with repairs or modifications to all types of equipment.
Your support is vital in helping us continue to make a difference in the lives of patients and families. Lurie Children’s relies on philanthropic funding to enhance its programs, services and research for children. To learn more, please e-mail the Ann & Robert H. Lurie Children’s Hospital of Chicago Foundation at foundation@luriechildrens.org or call 312.227.7500.
