03/28/2024
I’m on a rare disease journey, and not only because of my career. It’s a personal odyssey tracing back to the very roots of my family tree. It’s woven into the fabric of my earliest memories and my personal aspirations.
It began during a mundane morning routine with one of my brothers. Amidst the simplicity of brushing our teeth, I noticed his lack of development. Why, I wondered? That puzzle lingered in my mind until a Franklin College genetics class illuminated the mystery: Klinefelter Syndrome. This reshaped my brother’s life. It allowed him to embrace his strengths and build a beautiful family through adoption. It also redirected the course of my own life.
I veered away from medical school—a decision my family hasn’t let me forget— and found my calling in the pharmaceutical world. However, it wasn’t until after my tenure at Pfizer that I found my niche in medical advertising on Madison Avenue. I thrived there, crafting narratives for healthcare professionals and consumers that would improve patient health globally. Launching my own ad agency allowed me, with my team, to work on many different drugs and diseases. That’s where work on conditions like narcolepsy, Acquired hemophilia A (AHA), and rare cancers further fueled my passion for healthcare.
As research produced solutions for people with rare diseases, we were there to help. We delved into the complexities of conditions like Spinal Muscular Atrophy (SMA), Paroxysmal Nocturnal Hemoglobinuria (PNH), Transthyretin Amyloidosis (ATTR), and novel treatments for rare cancers. We learned to illuminate the intricacies of rare diseases and their treatment for healthcare professionals and consumers. It was an honor and a profound responsibility, driving us to master the nuances of each condition and its impact on the lives of patients and loved ones.
With each passing year, we’re doing a better job of helping people suffering from rare diseases, but we could do better. It still takes too long to reach a proper diagnosis, for example. Personally, I love solving these challenges. I get especially excited when there is a therapy that helps patients live better.
I can’t help but think back to when I was 18 years old and recognized that my brother had a rare disease, that it was the beginning of a life and a career that would be so strongly focused on healthcare, with a passion for understanding and communicating about complicated diseases and drugs—especially rare ones.
Do you have a rare disease story? Is your company working towards a rare disease solution? I’d love to hear about it.
Let’s talk.