Slowing the progression of juvenile-onset ALS

In some cases, the diseases being studied by the Oxford-Harrington Rare Disease Centre are so rare that they have yet to be identified and named. Although they may be nameless, they are never faceless: behind each disease or cluster of symptoms is a patient and their family hoping for a treatment or, better yet, a cure https://rarerevolutionmagazine.com/slowing-the-progression-of-juvenile-onset-als/ A rare disease and a difficult life Bonnie Mattingly Woolston knows all too well what it’s like to live with a rare disease. Like her father, grandfather and generations of Mattingly ancestors, Bonnie had suffered throughout her life from an unidentified progressive motor neuronopathy. An early memory of Bonnie’s came when she was six years old. Standing on the front porch of their home and watching her father struggle to walk across the lawn without falling, Bonnie asked her mother: “Mama, how did Daddy hurt his legs?” The reply: “Hush, honey. Daddy doesn’t like to talk about it.” As Bonnie relates: “So I hushed. I stayed hushed a few months later when our gym teacher had us run races on the playground and I was always last. I stayed hushed in high school when I sought out the least travelled staircase to reach my second-storey classes because I held up the hordes of students using the main stairs. The same was true at my college dorm, where four floors separated my bedroom from the dining room. And, in my first apartments after college, which were invariably two or three storeys above ground. I hated stairs.”