THIS YEAR'S AWARD RECIPIENTS 

KALEB YOHAY, MD
RECIPIENT OF THE 2022 ADVOCATE OF HOPE AWARD

Kaleb Yohay, MD was born and raised in New York City where we attended Stuyvesant High School. He then went to Wesleyan University to study Biology, Psychology and experimental music. While deciding what to do next he worked as a classical recording engineer, and then spent 3 years at Rockefeller University studying the neural mechanisms of song learning in birds. He headed north to earn his medical degree at the University of Vermont in 1993, and then south to complete pediatrics and neurology residencies at Johns Hopkins Hospital in Baltimore Maryland. In 2002, he co-founded the Johns Hopkins Neurofibromatosis Center.

Currently Dr. Yohay is an Associate Professor of Neurology and Pediatrics and Director of the Division of Child Neurology at the NYU Grossman School of Medicine. He is also the Director of the NYU Langone Health Comprehensive Neurofibromatosis Center, one of the largest and most active neurofibromatosis clinics in the United States. His medical practice is devoted entirely to the care of children and adults with NF1, NF2 and schwannomatosis.

Dr. Yohay's research career has focused on the development and implementation of new therapeutics for neuro-oncologic and neuro-genetic disorders, including a gene therapy trial for the treatment of Late Infantile Neuronal Ceroid Lipofuscinosis, convection enhanced drug delivery for pontine glioma, and clinical trials for neurofibromatosis.

He has been involved in the development of the first clinical care guidelines for adults with NF1. He has served on a number of scientific and clinical advisory boards and was recently appointed Chair of the Programmatic Review Board for the DOD CDMRP NF Research Program.

Dr. Yohay has worked with the NF population for over 20 years, and he is dedicated to improving the lives of people affected by NF through education, improved clinical care and new therapies.

REBECCA GRASSO
RECIPIENT OF THE 2022 PAUL BODNER MEMORIAL AWARD

Rebecca Grasso has had 9 surgeries to debulk tumors from her brain, spine and along peripheral nerves and to correct injuries sustained to her facial nerve from her brain surgeries. She has lost her hearing, has impaired balance and is enduring a lengthy and slow recovery from the aforementioned injuries to her facial nerve. In spite of the ordeal she has experienced she is determined to have a full and productive life. She graduated with honors from Siena College with a degree in Biology. While in college she met her future husband, Matt, who has remained by her side through all of her surgeries and difficult recoveries. She had to abandon her hope of becoming a physician but she did complete a doctorate in Physical Therapy and works as a Physical Therapist in Albany where she is very much liked and admired by her patients and colleagues. She and Matt had to postpone their wedding twice, first because of injury to her facial nerve which made it impossible for her to smile and then because of COVID. They were married in October 2020 in the chapel at Siena and we finally had a reception for them this past September. 

The reception featured an overwhelming demonstration of affection and support for this amazing young couple. Their determination to enjoy their life together inspired tears and admiration among the many family and friends present. Becky and Matt rehearsed their first dance together and executed it flawlessly at the reception. I don't think there was a dry eye in the room as Matt guided her through the steps and mouthed the words to the song they selected so she could follow the rhythm of the music which she could not hear.

Rebecca's drive and courage continues to inspire those around her.