Writing Your Own Respiratory Protocol

Life with a fatal lung disease like idiopathic pulmonary fibrosis (IPF) is very unpredictable. I thrive in routine, familiarity, and structure, so I have difficulty accepting that this disease can force instant changes. I’m still working on learning to let go of what I cannot control, like an…

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala

A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy helps kids with Dravet syndrome were among winners of the 2019 Rare Impact Awards. Officials of the National Organization for Rare Disorders (NORD) presented the awards during a June 22 dinner attended by…

Fighting Fatigue while Processing Trauma

It is 9 pm. My deadline for this column is in 12 hours. Some people would call this procrastination. I call it practice. I’ve been writing several columns in my head for the past three days. I decided not to worry about it and instead enjoy the last glorious days…