Bennett is a joyful four-year-old who loves water, music, and being outside. After more than a year of searching for answers for his developmental delay, he was diagnosed with MEF2C-related neuro-development disorder, a rare genetic condition that affects his ability to walk, talk, and perform daily activities independently. While Bennett is fully dependent on his caregivers, he’s making progress—he’s now crawling and has just started feeding himself. His determination and spirit inspire everyone who knows him.

Our family is raising funds to participate in the Volāre Study at Cornell Medical in Manhattan, New York. This groundbreaking natural history study brings together pediatric neurologists, geneticists, developmental pediatricians, and therapists to gather vital data on children with MEF2C. The study involves parent surveys, clinical assessments, blood draws, skin biopsies, EEGs, and requires four trips to New York over the next two years. Its goal is to lay the groundwork for future clinical trials that could lead to life-changing therapies for children like Bennett.

While the study reimburses some costs, our family faces significant out-of-pocket expenses for travel, lodging, and medical care. Since Bennett’s diagnosis, we’ve faced many challenges and moments of uncertainty. Hearing “there isn’t really anything you can do” was devastating, but we feel a deep responsibility to participate in research efforts. We hope that, through this study, important information will be gathered so that one day, families like ours can be told there is a treatment. Your support will help us take this important step for Bennett and for all those affected by MEF2C.