Felicia B. Axelrod, MD
40 Years of Care, Compassion and Dedication

In 1970 a young pediatrician, only a few years out of medical school, was named the director of the newly created NYU Dysautonomia Treatment and Evaluation Center. Dr. Felicia Axelrod immediately became the surrogate mother and chief medical officer of the FD community. Her selfless devotion to her patients and her indefatigable drive to improve their lives have been the hallmarks of her work ever since.
 
From the outset, Dr. Axelrod took a keen interest in her patients and began investigating every aspect of their struggle with familial dysautonomia. She set out to relieve their almost constant discomfort and to discover the factors that led patients to succumb to the disease in early childhood. As she began to identify the primary causes of mortality, she began to promote protocols and surgical procedures that led to increased survival and a reduction in the severity of the dreaded “autonomic crises” experienced by nearly all FD patients.
 
She worked tirelessly to transform FD from a fatal childhood illness into a more manageable condition. Her overriding motivation was to alleviate the horrible daily symptoms, including recurring nausea and wild swings in blood pressure that prevented her patients from leading normal lives. She soon became the world’s foremost authority on FD, and her devotion to her patients grew stronger every year.
 
She attended every FD surgery, remained on call almost every hour of the day, and even gave patients her home phone number. She pursued speech, feeding and physical therapy alternatives, helped patients in disputes with insurance companies, advised patients on diet and exercise, and drafted comprehensive letters to their primary care physicians on how to deal with each patient’s individualized care plan.
 
Early on, every family discovers that FD is a lonely disease. When a patient is diagnosed with FD and the family returns home, they find that no one in their family has ever heard of it. Very likely, their doctor has never heard of it either. School districts have no idea how to deal with a child with FD. All of this weighs heavily on every FD family. Yet for each family, the solitary beacon of hope is always the same. Dr. Axelrod gives them hope and inspires confidence. They can always take comfort knowing that this one remarkable individual would be there for them when they called, serving as their personal lifeline, never resting and always pursuing a new idea on how to make life better for their child.
 
Twenty-five years ago, she put together the first International FD Day conference. She invited every family, every doctor and every researcher with an interest in FD to attend. She fostered a sense of community and helped FD families feel that not only were they not alone, but that a growing cadre of doctors, researchers and therapists shared their sense of urgency to face the challenges of FD.
 
Over the course of the last decade, her success in this endeavor gave rise to a remarkable change in FD demographics. For the first time the average age of the FD population began to lean toward adulthood. The woman who started as a pediatrician now had just as many adult patients as young ones. However, rather than take this as reason to celebrate, she took it as a new challenge. “We have begun to conquer the challenges of the FD child,” she’d say, “but now we must face the unique challenges of the FD adult.”
 
Throughout her career, she has worked diligently to master every discipline that might help her patients. She enlisted the help of the best doctors and researchers in related fields to discover the FD gene, to establish a clinical research lab and to find the most skilled surgeons who could handle the unique challenges of FD patients.
 
It’s been forty years, and she shows no signs of slowing down. She looks as young as she did twenty years ago, and her intellectual curiosity and enthusiasm are as great today as they have ever been. Realizing that it’s likely that she will outlast all of us, the Dysautonomia Foundation decided it was time to honor her for her first forty years of service to our community.
 
Who knows what lies ahead for FD patients? Perhaps a definitive genetic therapy or, dare we dream, a cure? No one knows, but one thing is certain, whatever the future holds, Dr. Felicia Axelrod will be at the forefront, leading the way to a better life for her patients. And for that, we all hold her in our hearts, as our hero, our inspiration and our friend.

- David Brenner, Executive Director, Dysautonomia Foundation.