Muscle and Nerve Clinic

With a vision to inspire children with disabilities to live extraordinary lives, Children’s Mercy Muscle and Nerve Clinic provides evaluations and holistic care of children with neuromuscular diseases. 

All the specialists your child needs in one visit

Neuromuscular diseases can cause weakness and can affect the heart, lungs and bones. Because these diseases affect different areas of the body, your child will need to be followed by different specialists. 

In the Muscle and Nerve Clinic, your child will see multiple specialists at one visit, on one day, at one time. This approach helps create efficient and effective care and communication between you and your child’s doctors. Our goal is to accommodate your child’s needs in fewer visits so they miss less school than if they saw all the specialists separately.

Specialists in the Muscle and Nerve Clinic:

• Physical Medicine and Rehabilitation: Dr. Diana Marchese and Thuy-Tien Dang, APRN
• Pulmonology: Dr. Samira Naime and Dr. Erin Khan
• Cardiology: Dr. Brian Birnbaum and Rebecca Juhl
• Genetics: Kendra Engleman
• Nutrition Services
• Physical and Occupational Therapy
• Social Work
• Wheelchair and equipment specialist
• Care Coordinators
• Palliative Care

We can also coordinate your child’s appointment to include orthotics/bracing, X-rays, endocrinology and the Bone and Mineral Health Clinic on the same day or next day if you are traveling long distances.

Advancing care

Certified Duchenne Care Center

Children's Mercy is a recognized Certified Duchenne Care Center by the Parent Project Muscular Dystrophy (PPMD), which means that we provide care based on established national guidelines and standards. We offer Exon Skipping therapy. This reflects our team’s commitment to the care of the Duchenne Muscular Dystrophy patients and their families.

SMA Treatment Center

Children's Mercy is a Cure SMA treatment site for the medications Spinraza and Zolgensma. These two medications are used to treat Spinal Muscular Atrophy (SMA). We have a dedicated SMA Coordinator to ensure comprehensive and timely care with regards to these medications.

Research

We collaborate with the MDA, University of Kansas Medical Center, Parent Project Muscular Dystrophy and CureSMA to connect patients to available research opportunities. Clinical trials can also be found here.