News
A long day of play reminds us why a child’s sleep schedule is...
2+ hour, 41+ min ago (303+ words) Pushing our daughter's limits came with some consequences Written by Richard E. Poulin III | February 24, 2026 There are certain sounds that instantly wake a parent from the deepest sleep, especially for parents of children with aromatic l-amino acid decarboxylase (AADC) deficiency. A…...
The power of play: How game night became our daughter's best therapy
3+ week, 37+ min ago (593+ words) Board and card games have become occupational therapy for Rylae-Ann Written by Richard E. Poulin III | February 3, 2026 My wife, Judy, and I have always been a competitive couple. Backgammon? Intense. Canasta? Ruthless. Ping-Pong? Fast-paced! Trash talk was common, laughter was loud,…...
Dozens of 2025 studies support genome-first testing in rare disease
1+ mon, 1+ week ago (355+ words) Testing company pushing genomics approach to ID conditions like AADC Written by Marisa Wexler, MS | January 14, 2026 Genomics is the study of an organism's entire genome, essentially all of its DNA. This varies from genetics, which typically focuses on the study…...
How we protect our mental health as rare disease parents
1+ mon, 1+ week ago (272+ words) 5 lessons we've learned from caregiving for our daughter Written by Richard E. Poulin III | January 13, 2026 Behind every child, especially a child with complex needs, are parents carrying unseen emotional weight. Our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC)…...