Families of SMA
Medical Advisory Council

The Families of SMA Medical Advisory Council is one of the most highly respected bodies of SMA medical and clinical experts in the U.S., setting the agenda for proactive, creative, and collaborative leadership on issues that improve the quality of medical care for those affected by SMA.  The Medical Advisory Council was formed in June 2009. 
 
The new Council will focus on educating families, health care providers, and the public about SMA; expanding SMA standards of care; and translating positive research results into clinical practice.

Dr. Mary Schroth, a leading pediatric pulmonologist will serve as Chair for the new Council. 

Mary K. Schroth, MD, Chair
Dr. Schroth is the Director of the Pediatric Pulmonary Center Grant at the American Family Children’s Hospital, University of Wisconsin School of Medicine and Public Health in Madison. She is also an Associate Professor of Pediatric Pulmonology on the faculty at the University of Wisconsin.  She has been instrumental in developing a leading respiratory care program for children with neuromuscular disease and, with colleagues, in developing a multidisciplinary neuromuscular clinic.  She played a pivotal role in the development of the Consensus Statement for Standards of Care in SMA. As a specialist in SMA respiratory care and an educator, Dr. Schroth is a leader in the SMA community and with Families of SMA.

Official Members

Susan Apkon, MD
Dr. Apkon is the Director of Rehabilitation Medicine at Seattle Children’s Hospital in Seattle Washington. She is an Associate Professor of  Rehabilitation Medicine at University of Washington.  She is the Director of the Neuromuscular Clinic at Seattle Children’s and cares for children with spinal muscular atrophy in this multidisciplinary clinic.  As a rehabilitation physician, her goal is to improve the functional abilities of children with SMA and work to improve their quality of life. As a board-certified pediatrician, she also helps primary care doctors throughout the Pacific Northwest with the overall medical management of children with SMA.

Vanessa Battista, RN, MA, CPNP, CCRC  
Ms. Battista is a Pediatric Nurse Practitioner and a clinical faculty member at the William F. Connell School of Nursing at Boston College. She was previously working as a Nurse Practitioner at the SMA Clinical Research Center at at Columbia University and is now working to create a Pediatric Palliative Care Program for graduate nursing students at Boston College. 

Thomas Crawford, MD
Dr. Crawford has been interested in all aspects of SMA since 1980. He is currently at Johns Hopkins hospital in Baltimore, Maryland and continues to be involved in research and clinical care of children with SMA. He is also a member of FSMA's Scientific Advisory Board.

Richard S. Finkel, MD
Dr. Finkel is a pediatric neurologist and director of the Neuromuscular Program at The Children’s Hospital of Philadelphia. He has worked with SMA patients for 25 years and is now engaged in several SMA clinical trials, including one on Type I patients funded by Families of SMA/Project Cure.

Albert Freedman, Ph.D.
Dr. Freedman is a child and family psychologist in independent practice in West Chester, Pennsylvania.  He provides consultation and training to professionals in health care and educational settings, and frequently speaks and writes on the topic of caring for children with special needs.  He serves as a member of the Family Advisory Council at the A.I. duPont Hospital for Children in Wilmington, Delaware and as a consultant to Bayada Nurses in Moorestown, NJ.  Dr. Freedman's son, Jack, was born in 1995 and is affected by SMA Type I.

Robert Graham, MD
Dr. Graham, a specialist in Critical Care Medicine, is the Clinical Director for Clinical Care, Anesthesiology, Perioperative Extension (CAPE) and Home Ventilation Programs at the Children’s Hospital Boston in Massachusetts. He is dedicated to both the acute and long-term care of children with SMA.  Through his outpatient, home visit, and educational programs, he hopes to improve the care and quality of life for children and families with SMA. 

John Grayhack, MD
Dr. Grayhack currently serves as an Attending Physician and Surgeon at Children's Memorial Hospital in Chicago and is Associate Professor at Northwestern University Feinberg School of Medicine.
 
John T. Kissel, MD
Dr. Kissel is currently Professor of Neurology and Director of the Division of Neuromuscular Disease at The Ohio State University in Columbus, Ohio. He has been on the staff at The Ohio State University since 1985 in the Division of Neuromuscular Diseases, and was Interim Chair of the Department from 2004 to 2006. He is co-director of both the Muscular Dystrophy Clinic and the ALS Clinic at Ohio State. He has published extensively in a wide range of peripheral nerve, muscle, and anterior horn cell disorders. His particular interests include facio-scapulo-humerol muscular dystrophy, and clinical trials in the various muscular dystrophies and inflammatory myopathies. He has also participated in clinical trials for inflammatory neuropathies, anterior horn cell diseases (including spinal muscular atrophy), and myasthenia gravis. He is the co-author of a popular textbook of peripheral nerve disease, “Diagnosis and Management of Peripheral Nerve Disorders,” and has written chapters for many of the standard neuromuscular textbooks. He is President of the Neuromuscular Section of the American Academy of Neurology, a Fellow in the American Academy of Neurology, and a member of the American Neurological Association.

Richard M. Kravitz, MD
Dr. Kravitz is Associate Professor of Pediatrics in the Division of Pediatric Pulmonary and Sleep Medicine at the Duke University Medical Center in Durham, North Carolina. He has a long-standing interest in caring for patients with neuromuscular weakness and helps to advocate for their needs on a local, state, and national level. He is also very active in genetic research and serves as the principle pediatric pulmonologist for a study on novel enzyme replacement therapy.

Kristin J. Krosschell, PT, MA, PCS
Ms. Krosschell is a pediatric physical therapist.  She is a faculty member in the Department of Physical Therapy and Human Movement Sciences at the Feinberg School of Medicine, Northwestern University, in Chicago Illinois. Her primary focus has been children with neuromuscular and neurological disorders and muscle diseases. She is a. frequent speaker at the SMA Annual Conference and has worked closely with FSMA for many years.  Her work in pediatric neuromuscular care spans nearly 30 years.
                          
Garey Noritz, MD
Dr. Noritz specializes in both pediatrics and internal medicine.  He works in the Division of Comprehensive Care, within the Departments of Pediatrics and Internal Medicine, at MetroHealth Medical Center of Case Western Reserve University.  He cares for children and adults with SMA in his primary care and neurodevelopment practice and works with the MDA clinic in all facets of care, including inpatient and outpatient care, pulmonary, GI, orthopedic, and palliative care.  MetroHealth is the home for children and adults with all many neurodevelopmental disabilities; they have successfully partnered with pediatric and adult specialists to provide coordinated care for all patients, regardless of age.

Karen Patterson, MS, PT, PCS
Ms. Patterson is a Faculty Associate with the University of Wisconsin Physical Therapy Program in Madison, Wisconsin. She has worked in pediatric physical therapy for 13 years, in almost every setting possible and now teaches the pediatric neurology classes for a doctoral program in PT at the University of Wisconsin.  She sees pediatric patients in the outpatient rehab center, including SMA patients of all types.  She was the senior physical therapist for the American Family Children’s Hospital, where she worked with many children with SMA who were hospitalized.  As an Investigator with Project Cure, she has worked on the Carni-Val studies for SMA Type II and III and with ongoing Type I studies, with Dr. Schroth. 

Richard Shell, MD
Dr. Shell is a Pediatric Pulmonologist and Associate Professor in the Section of Pulmonary Medicine at the Nationwide Children’s Hospital and The Ohio State University in Columbus, Ohio. He is involved in the SMA Clinic there and very proactive in educating patients and families, as well as the medical staff, about the disease.  He is also Associate Director of the Hospice and Palliative Care Team, where he helps families face very difficult decisions, and also follows SMA patients in the Pulmonary Clinic.

Kenneth Silver, MD
Dr. Silver is an Associate Professor and the Departments of Pediatrics and Neurology, and the Program Director for Child Neurology and Training at the University of Chicago Comer Children’s Hospital. He has extensive experience and interest in neuromuscular disorders.  For the past 30 years, he has performed EMG studies, provided counseling and education to patients and families, and been involved with research. At the University of Chicago, in addition to role as Co-Director of the Neurogenetics Clinic, he teaches residents about childhood neuromuscular disorders.

Brian Snyder, MD, Ph.D.
Dr. Snyder is an Associate Professor of Orthopaedic Surgery at Harvard Medical School.  He is also Director of the Orthopaedic Biomechanical Laboratory at Children’s Hospital of Boston, in Massachusetts.

Advisory Members (Ex-Officio)

Andreas Constantinescu, MD, Ph.D.
Dr. Constantinescu is a Pediatric Pulmonologist and Assistant Professor of Clinical Pediatrics at Columbia University/Children’s Hospital of NY-Presbyterian in New York City. Through his involvement in the SMA Center at Columbia University, Dr. Constantinescu has developed a special interest in the pulmonary care of children with SMA and other neuromuscular disorders.  He participates in clinical trials at Columbia that study the natural history and therapeutics in SMA.

Susan Iannacccone, MD
Dr. Iannaccone is the Jimmy Elizabeth Westcott Distinguished Chair in Pediatric Neurology. She is Professor of Neurology and Pediatrics at the University of Texas Southwestern Medical Center and Director of Child Neurology at Children's Medical Center Dallas. She has been the Principal Investigator for AmSMART, American spinal muscular atrophy randomized trials, since 2000.

Jonathan Finder, MD
Dr. Finder is Clinical Director of the Division of Pulmonary Medicine and Associate Professor of Pediatrics at the University of Pittsburgh, School of Medicine and Children’s Hospital, of Pittsburgh in Pennsylvania. He is very interested in improving the respiratory care of individuals with neuromuscular weakness.

Petra Kaufmann, MD
Dr. Kaufmann is Co-Director of the SMA Research Center at Columbia University in New York City. She is a neurologist, who works with SMA Type I, II, and III patients, with training in neuromuscular diseases and clinical trials.

Anastassios C. Koumbourlis, MD, MPH
Dr. Koumbourlis is Chief of Pulmonary Medicine at Schneider Children’s Hospital and Associate Professor of Clinical Pediatrics at the Albert Einstein College of Medicine in Great Neck, New York.

Nancy Kuntz, MD
Dr. Kuntz is Medical Director at Children's Memorial Hospital and Associate Professor of Pediatrics at Northwestern University.

Jo Anne Maczulski, MA, OTR/L
Ms. Maczulski, based in Chicago, has been practicing occupational therapy for nearly 30 years. Her master’s is in Motor Learning from Columbia University. She has a great deal of experience dealing with children with sensory integration problems and neuromuscular deficits and diseases. As a speaker at many SMA Annual Conferences, and a member of the Medical Advisory Board, Ms. Maczulski has served FSMA for many years. She has also done live chats, answered questions that come in through our Ask the Expert Service, and consulted with SMA families at the Conference. In addition to her expertise in SMA, she covers other neuromuscular disorders, sensory motor deficits, autism, various psychiatric problems, prematurity, seizures, brain damage, and developmental delay.

Barry S. Russman, MD
Dr. Russman is a Professor of Pediatrics and Neurology at Oregon Health Science and University (OHSU) and with Shriners Hospital for Children in Portland, Oregon.

Kathryn J. Swoboda, MD
Dr. Swoboda is an Associate Professor of Neurology and Pediatrics, a Diplomate of the American Board of Medical Genetics, and Director of the Pediatric Motor Disorders Research Program at the University of Utah  School of Medicine. She is a leader in the SMA community, as a pediatric neurologist, medical geneticist, and researcher.  She has played a pivotal role with Project Cure and clinical trials. Her primary clinical research interest is SMA.  She is also a member of FSMA's Scientific Advisory Board.

Nanci Yuan, MD
Dr. Yuan is a Pediatric Pulmonologist and an Associate Professor at Stanford University School of Medicine in Palo Alto, California. She sees most of the pediatric SMA patients at Stanford and works in their multidisciplinary clinic. She played a very important role in writing the respiratory care section of the Consensus Statement for the Standard of Care in SMA.