Language – and Legacy –Matter

“I think the most important thing to know is that they were loved, and we were, and continue to be, a family in love with each other.”

This Mother’s Day, the words of my dear friend and fellow patient advocate, Pat Furlong, were etched in my mind. She recently shared them with me and my Rare Disease colleagues in one of our many conversations on patient centricity, this one focused on the power of language in research and development. Pat, who is the founder of Parent Project Muscular Dystrophy (PPMD), lost her two sons to Duchenne muscular dystrophy (DMD), a rare progressive disorder that causes muscles to weaken over time, ultimately affecting the whole body, for which there currently is no cure. Reflecting on their legacies, she has found strength and community in her work, helping others on their journey to diagnosis, looking carefully at the needs of families living with rare disease, and ensuring their voices are heard – in every aspect of their lives.

As I spent the day thinking about my own family, and the paramount importance they hold in my life, I was reminded of Pat’s great advice to us and felt a renewed and reinforced sense of our purpose – to help advance breakthroughs that can change patients’ lives. For so many patients and their families, their love for one another pushes them forward to keep seeking new therapies, new approaches to care management, new ways of thriving after diagnosis.

As researchers and advocates, it is our role to learn from their experiences and help advance the science that may one day transform the lives of those around them. It is our job to listen, to strive for the next medical milestone, and to deliver for the legacy of those patients who have inspired us, as well as those patients whose lives we hope may be made better as a result of us. ?

Echoing Pat’s words, “It is, after all, about empathy and vulnerability, the willingness and courage to hear each other, to make progress together, and to make sure the patient voice is carried through the development process.”

To Pat and all the amazing patients and advocates with whom I work, I can assure you that, at Pfizer, your language – and your legacy – matter.?