The Journey of Beautiful Destinations — Richard E. Poulin III

Last week, Judy, my wife, and I had the privilege of attending the International Neurotransmitter Disorders Conference (INDConf), held Nov. 5-7 at Goodenough College in London. Nestled in the heart of…

As parents of a child with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I have learned that balance is something we must constantly work to find. Between therapies,…

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, we quickly learned that caregiving required us to wear many hats. My wife, Judy, and I stepped into…

Each year, AADC Awareness Day brings together families, advocates, researchers, and supporters from around the globe. It’s more than just a date on the calendar (this; it’s a reminder of the strength of our…

For many children with aromatic l-amino acid decarboxylase (AADC) deficiency, gene therapy holds opportunities for the future. It’s a chance for them to move, speak, and experience life in ways that…

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, the first thing the internet told us was devastating: She would die. At that moment, my wife, Judy,…

As a husband and father of a child with a rare disease, I’ve seen firsthand how being a caregiver can test a marriage. Our daughter, Rylae-Ann, has aromatic l-amino acid decarboxylase (AADC) deficiency,…

Starting something new is never easy for a child with aromatic l-amino acid decarboxylase (AADC) deficiency, especially when it involves doctors, clinics, and the unknown. Two weeks ago, we had a…

As parents, Judy and I have learned that change can mean very different things to different children. For many, change brings excitement, curiosity, and growth. For our daughter, Rylae-Ann, change once meant fear, uncertainty,…

I’ve never been someone who spends time looking back to psychoanalyze my past or delve deeply into philosophy. Instead, I’m typically looking forward, planning, and moving ahead. However, two significant events that unfolded in…

When our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, my wife, Judy, and I felt utterly lost. The diagnosis was ultrarare, the prognosis uncertain, and the treatments…