A Few of My Favorite Words to Live By

A Few of My Favorite Words to Live By

I always have had a fascination with words. It stems from my mom and dad, both of whom instilled in me a voracious appetite for reading and writing. Letters from my grandfather blending humor, pathos, self-deprecation, irreverence, sobriety, fact, and thoughtful opinion cemented the notion that words, carefully pieced together,…

How I Learned to Love My Rollator

In 2010, a few short months after my ALS diagnosis, I found myself having to rely full time on a rollator. I’ll be the first to admit I wasn’t happy at all. But now, nine years later, it’s become my ever-present silent buddy, and I can’t imagine my life…

Enrollment Complete for ORARIALS-01 Trial of Arimoclomol in ALS Patients

Patient enrollment is now complete, ahead of schedule, for the Phase 3 ORARIALS-01 clinical trial assessing the effectiveness of Orphazyme’s investigational therapy arimoclomol in the treatment of amyotrophic lateral sclerosis (ALS). “The completion of enrollment for Orphazyme’s pivotal ALS trial is another great milestone for our clinical development program. We are…

Embracing the Joyful Sadness of Life

This year for Father’s Day, I ordered a basket of gourmet caramel apples from Amy’s Candy Kitchen, a little shop in Cedarburg, Wisconsin. Amy’s Granny Smith apples are large and covered with sweet caramel, salty pecans, or other nuts. It is an explosion of flavor, magnifying both the…

European Initiative Targets Diagnosis, Treatment of Rare Diseases

A new international consortium based in Paris, and funded largely by the 28-member European Union, intends to speed the diagnosis of rare diseases, while also accelerating the development of treatments for the 95% of such illnesses that currently don’t have one. The European Joint Programme on Rare Diseases (EJP…