Treatment Selection – Working With Your Care Team
Produced in collaboration with Cure SMA and NORD
Support for this patient education program was provided by Biogen and MRC Holland
While treatment options for spinal muscular atrophy (SMA) continue to expand, they also require early intervention for their promising benefits to be fully realized. With each advance, patients, parents, caregivers, and families encounter a picture of SMA that was previously unknown, requiring support and education on new treatments and their impacts on SMA. When parents and caregivers receive that support and information, it is well established that patients achieve better long-term outcomes.
This new educational program is led by a panel of experts in SMA, including a neurologist, and an Ob/Gyn, who are joined by patient and advocacy representatives. They discuss available treatments (including new disease-modifying therapies), and strategies to ensure therapies are implemented in a timely and effective manner. Panelists also address common questions about prenatal testing, survival, motor function, mobility, nutrition, and optimizing outcomes with treatment.
This important educational activity is designed to give patients, parents, caregivers, and families the ability to actively participate in treatment decisions, anticipate the evolving care needs of patients, and find the supportive care that is such an important component in the effective treatment of SMA.
After watching this program, you will have a better understanding of:
- Risks/benefits, administration, and treatment outcomes of available treatment options for SMA
- Methods to maintain respiratory health, motor function, mobility, and optimal nutrition in patients with SMA
- Strategies to best enable patients to meet new challenges that arise from expanding functionality and capabilities
- The evolving role of specialties such as PCPs and Ob‐Gyns in the care of SMA patients and families
Experience with Diagnosis and Genetic Testing – The “Diagnostic Process” and How to Make it Easier
Multidisciplinary Care – Needs Remain Despite Advances in Treatment
Evolving Relationships with the Family Doctor/Ob-Gyn in the Child and Adult Care Setting
Mary Schroth, MD
Chief Medical Officer, Cure SMA
Mary Schroth, MD, is the chief medical officer of Cure SMA. She is professor emeritus at the University of Wisconsin School of Medicine and Public Health in Madison where she served as a pediatric pulmonologist, co-director of the Pediatric Neuromuscular Clinic, and director of the Pediatric Pulmonary Center Grant. Dr Schroth feels honored to be able to share her expertise of SMA care through her role with Cure SMA.
Julie Parsons, MD
Professor of Clinical Pediatrics and Neurology, Haberfeld Family Endowed Chair in Pediatric Neuromuscular Disorders. Children's Hospital Colorado, University of Colorado School of Medicine
Julie A. Parsons, MD, is a professor of clinical pediatrics and neurology at the University of Colorado School of Medicine in Aurora, the Haberfeld Family Endowed Chair in Pediatric Neuromuscular Disorders, and co-director of the neuromuscular clinic at Children’s Hospital Colorado. Her clinical interests include neuromuscular diseases such as muscular dystrophies, spinal muscular atrophy (SMA), and myotonic dystrophies. She is an active participant and principal investigator for many clinical trials, and is a member of organizations that include the Child Neurology Society and the American Academy of Neurology. Dr Parsons earned her MD from the University of Colorado School of Medicine, followed by residencies in pediatrics and child neurology and a neuromuscular medicine fellowship.
Melissa Gibbons, MS, CGC
Assistant Professor; Certified Genetic Counselor, University of Colorado School of Medicine Children's Hospital Colorado
Lizbeth McCarthy, MD
Chief Medical Officer, Cure SMA
Liz McCarthy, MD, is director of the Genetics and Ultrasound Program at Denver Health in Colorado. She grew up in Berkeley, California, and then attended the University of Colorado at Boulder where she earned her bachelor’s in biology. Dr McCarthy received her medical degree, completed an OB/GYN residency, and completed a fellowship in clinical genetics at University of Colorado. She lives in Louisville, Colorado with her husband, two dogs, and 19-year-old daughter. Dr McCarthy enjoys running, skiing, and just started golf lessons.
Adult with SMA Type II
Patient Interview Speaker