JB Ashtin Musings
Rare Disease Day: What the World Needs Now
Contributed by Ashlee Hartger, Marketing Manager Compassion It’s difficult to comprehend what living with a rare disease feels like—the questions, the uncertainties, the fear. Unless you live this life, either as a patient or family member, you can’t really know the agony of needing a diagnosis and dreading a diagnosis all at the same time. […]
Scientists…Who Happen to be Women
Mae Jemison, engineer, physician, former NASA astronaut, and the first African American woman to travel into space said, “Don’t let anyone rob you of your imagination, your creativity, or your curiosity. It’s your place in the world; it’s your life. Go on and do all you can with it, and make it the life you […]
Limitless
What does it mean to be LIMITLESS? Our society is full of dreamers—people who choose to ignore limits and look beyond. From these dreams, magic is created. Robots vacuum floors, document schedules, and tell us if the weather requires a jacket. Cars drive themselves. Watches monitor heartbeats. Eyewear is being fitted for augmented reality. And […]
Saving Grace: A Lesson in Storytelling from Peloton
Contributed by Ashlee Hartger, Marketing Manager Twas the Night Before Christmas… The year is 2019 and a thin, seemingly wealthy Grace from Boston wakes up on Christmas morning to find a shiny new Peloton bike in her elegantly festive living room, gifted by her husband. Grace happily receives the bike. On her first ride […]
Turkeys and Time Machines
Contributed by Ashlee Hartger, Marketing Manager It’s the year 2000. My best friend and I are in my grandma’s living room dancing to Blink-182’s “All the Small Things.” We crank the volume right as Tom DeLonge’s perfectly nasal voice sings “Turn the lights off, carry me home” and collapse into a fit of “Na-na, […]
Scientific Storytelling: Making Your Science More Human
Contributed by Pete Luongo, MD Senior Scientific Director “Scientific storytelling.” It’s what all the cool kids are doing. On every corporate website, at every congress, there is always an anecdote about the importance of using an organization’s messaging to tell a story about the brand. The buzzphrase leaked its way into the scientific world […]
Battling Burnout: The Need for Wellness in the Workplace
Battling Burnout: The Need for Wellness in the Workplace Contributed by Melissa Kraft, SHRM-CP, Associate Director, Operations Disengagement, fatigue, increased work hours, decreased productivity and quality of work, lack of motivation, isolation, increased and/or unexplained ailments – any of these sound familiar? They are just a few symptoms of workplace burnout, characterized […]
Patient Experience Week: A Celebration of the Warrior Spirit
Patient Experience Week: A Celebration of the Warrior Spirit Written by Ashlee Hartger with contributions from Kimberly Bregger Rare Disease We’ve all been a patient in some capacity. Whether it be an annual check-up with our primary care physician, or an emergency trip to the urgent care for an ankle sprain, most of […]
Show Your Rare – Show You Care
Contributed by Connor Galloway, Sr Director, Business Development & Strategy If you know me, then you know that shining a big spotlight on the plight of rare disease patients and families is a particularly strong passion of mine. When I was in high school, my childhood friend Andy lost a lifelong battle with Duchenne […]
Ready Set Grow
Contributed by Joni Bradley, PharmD, President/CEO Welcome to 2019! For many of us, the New Year presents a time for reflection. It inspires us to take stock and look back on our successes (and sometimes failures) of the previous year, and then look forward to the opportunities that are possible for the year ahead. […]