Our mission is to provide compassionate, family centered, multidisciplinary care with the goal of maximizing that child’s potential, minimizing complications and promoting quality of life. This care is coordinated across the health care spectrum from outpatient care in the clinic and community to hospitalization for elective procedures and acute illness.  Families will develop long term relationships with the team and will always have a place to turn for care, information and support. 

Each patient’s care is designed to ensure they receive:

• Comprehensive care delivered in a compassionate, child and family friendly setting.
• Coordinated care to maximize services received at each visit with a goal to minimize trips and travel.
• Evidence based care utilizing the most up to date research supported therapies.
• Empathetic listening to promote comfort in asking questions and receiving honest and complete answers.
• Partnership with parents and families working together toward the common goal of optimizing the child’s life. 

Because children with SMA are at risk for a number of potential complications, our SMA care team includes:

• Pediatric Neurologist: will make or confirm the diagnosis of SMA and provide treatment recommendations.
• Pediatric Rehabilitation Physician: will work with families to optimize function through modalities of therapy and assistive devices including wheelchair seating and bracing.
• Pediatric Cardiologist: will work to ensure long term cardiac health and monitor for cardiac function and arrhythmias.  Annual testing includes echocardiogram and Holter monitor. 
• Pediatric Pulmonologist: will evaluate and optimize respiratory function and mucus clearance and mechanical ventilation.  The pulmonologist will also monitor for sleep disordered breathing.   Annual testing includes pulmonary function for children ages 5 and older and carbon dioxide and oxygen saturation levels.
• Genetic Counselor: will work with families to understand the genetic basis of SMA and the impact on the family as well as provide access to clinical trials.
• Clinical Dietitian: supports and guides the nutritional plan for each child based on their degree of involvement and clinical situation.  The dietician monitors growth and body chemistries through annual blood tests and recommends nutrition based on this information.  The dietician works collaboratively with families to incorporate family preferences into the nutritional plan.
• Social worker: assists families navigate the many dimensions of SMA care including advocating with insurance, school and community issues as well as providing family support.
• Nursing: The team includes a nurse practitioner and registered nurse to provide care coordination, family and professional education and phone support.
• Respiratory Care Specialist: supports the respiratory care and equipment required including ventilators, cough assist, chest oscillator vests.
• Physical Therapy, Occupational Therapy, and Wheelchair Seating Services: are also present to provide exercise and equipment recommendations as well as provide support for school or home therapists.

For more information or schedule an appointment by calling us at 734-615-3267.