ONE TOUGH MOTHER

EMMA CIAFALONI

BY CHRISTINE PIACENTINO

Recently, I was thrilled to attend an appearance at the University of Rochester’s Certified Duchenne Care Center with the current reigning Mrs. New York America - Jessica Fabus Cheng.

The Certified Duchenne Care clinic at the U of R is one of 28 Certified clinics in the USA. These clinics serve 3600 patients and provide 500 care providers. Care. It’s at the heart of what all the Certified Care Centers do. All the Parent Project Muscular Dystrophy (PPMD) Duchenne Certified Care Centers strive to ensure that people living with Duchenne live longer, more vital lives by providing access to expert healthcare providers, a comprehensive team of subspecialists, and cutting-edge treatments.

Early in my journey, I was responsible for managing my son’s care and putting a team of specialized experts together. The model of comprehensive care does not follow the current health care model of specialists being in their silo. It was fascinating to take a step back from being a superwoman advocate for my son and watch how the team at the U of R Certified Center approached Duchenne care for approximately 150 patients. I am grateful that the U of R was willing to implement the model of comprehensive care for Duchenne Muscular Dystrophy. Emma Ciafaloni, MD, leads the team at the U of R. Dr. Ciafaloni, and her team is the heart of care at the U of R clinic. I had the opportunity to speak with her during my visit.

Can you tell us a little about yourself? I’m a Professor of Neurology, Pediatrics, and Obstetrics and Gynecology at the University of Rochester. I was born In Milano, Italy, and moved to the USA in the early 90s to pursue research in Neurology. I have dedicated my academic career to caring for patients with neuromuscular diseases and providing early access to novel treatments for rare muscle diseases in children, such as spinal muscular atrophy and Duchenne muscular dystrophy. My wonderful poet husband and I have been married for 29 years, and he is instrumental in supporting my career. We are blessed with a 28-year-old son and an 18-year-old daughter.

What’s your greatest strength or superpower?

I look at the positives in life, and I always try to learn something new.

What inspired you to specialize in Neurology and Duchenne Muscular Dystrophy Research?

The intellectual challenge of complicated diseases combined with the love for people: in neurology, you really must listen to your patients’ stories to figure out what’s wrong; they will teach you everything you need to know about their disease. It’s not just about the tests; I love this human connection.

How do you think Parent Project Muscular Dystrophy’s (PPMD) advocacy efforts in Washington helped New York State and the University of Rochester?

PPMD has been a leader in advocating