As I sat in the hot seat surrounded by a jury of my peers, I wondered what form of justice would be served. Would I be pelted with water balloons? Covered in ketchup and mustard? Egged on to eat a cup of sardines?
I was volunteering at a summer camp for people living with neuromuscular disorders, and I had been called to Kangaroo Court along with other volunteers accused of offenses including being too cool or snoring too loudly. My infraction? Taking too long to sign up as a volunteer at Camp Promise!
As Head of Patient Advocacy at ITF Therapeutics, I have spent years learning from the Duchenne community through meetings, conferences, advisory boards, and one-on-one conversations. Yet that small mistake at camp offered a different kind of perspective. It reminded me that meaningful understanding is not built from a distance. It is developed through proximity, humility, and sustained listening.
I first came to Camp Promise hoping to better understand the lives of people with Duchenne. I returned because I have learned that understanding is not something gained once. It is something continually earned by showing up, listening carefully, and recognizing that people living with Duchenne and their families are the experts in their own experiences.
Throughout my week at camp, I help campers with the routines that make up everyday life: getting dressed, showering, toileting, transferring, and settling in for the night. These are deeply personal moments built on trust and vulnerability. They are not simple, and they are not glamorous, but they are often when the most important lessons occur. The act of getting ready for the day can require careful planning, clear communication, patience, and trust between two people who may have just met. It has taught me how much independence, dignity, and routine can depend on details many of us rarely have to consider.
Each year, I leave camp asking better questions than the ones I arrived with. While I can never fully understand what it means to live with Duchenne, spending an immersive week alongside these young men challenges my assumptions and shapes how I approach my work. It reminds me to begin with curiosity, listen with greater intention, and focus on the realities that matter most to the community.
When I returned from camp after that first summer, I knew the experience had changed me. It gave me an understanding I could not have gained any other way, and I did not want that opportunity to stop with me. Today, other employees at ITF Therapeutics have the opportunity to volunteer at camp as well. We approach the experience thoughtfully: volunteers receive manager support and training before they arrive, and everyone understands that they are there to serve, listen, and learn. Our goal is for team members to return to work with a deeper appreciation of the Duchenne experience and bring that awareness into their day-to-day work.
It may sound counterintuitive for a company to encourage employees to step away from their responsibilities for several days, but ITF Therapeutics has long believed that understanding the community we serve is not a distraction from the work; it is the work. Before we had an office, a marketing team, or a sales force, our President hired a Head of Patient Advocacy as the company’s third employee. That decision reflected a foundational belief: understanding the community had to be embedded in the company from the beginning.
Somewhere along the way, our industry coined the phrase “patient centricity.” It’s an important idea, but it only matters when it is put into practice. For me, moving beyond the buzzword begins with recognizing that I am the one who should be learning. It means listening before speaking and asking before assuming. It means being willing to step into someone else’s world, not for a photograph or a social media post, but because the experience changes you. My time at Camp Promise reminds me that listening is not a milestone to reach but a discipline to practice. There is always more to learn, and those lessons continue to shape the questions I ask, the decisions I make, and the way I serve the Duchenne community.
About the Author
Caroline Allen
Head of Patient Advocacy, ITF Therapeutics
Caroline Allen is a seasoned biotechnology industry leader with extensive experience in global and regional marketing, patient advocacy, and communications. She has coordinated multiple product development and launch initiatives from strategic planning through execution in the rare/orphan disease space and has a longstanding commitment to ensuring that the patient voice is heard and reflected in all phases of clinical research and product commercialization. She has led the development of effective patient access and support strategies at multiple leading life sciences companies including Apellis Pharmaceuticals, bluebird bio, Biogen, and Shire HGT. Caroline served on the board of directors of the National MPS Society. She earned her BA degree from Hamilton College.
