Living with a rare genetic disease means waking up every day to face a reality that many cannot see and even fewer can truly understand. I am living with Cystic Fibrosis (CF) and it’s more than a diagnosis. It’s a lifelong journey filled with obstacles, resilience, and unwavering determination to fight for myself and advocate for others with the disease.
Cystic Fibrosis is a progressive rare genetic disease that affects the lungs, pancreas and nearly all other organs in the body. CF causes the body to produce thick, sticky mucus that clogs airways, traps bacteria, and makes breathing a daily challenge.
The Hidden Struggles
Cystic Fibrosis is a largely invisible illness. From the outside, many of us appear healthy, smiling and active. But what people don’t see is the constant fight happening beneath the surface. Behind those smiles are daily battles: the exhaustion, the pain, the relentless routines that our lives depend on.
There are days when getting out of bed feels like climbing a mountain – our bodies too tired to move, but the treatments, medications and therapies can’t wait. Plans are often changed or canceled, not because we want to, but because our health demands it. Sometimes, even our biggest dreams are paused, not by lack of motivation, but by the harsh reality of living with this disease.
And yet, in the midst of all of this, we persevere.
Strength in Every Breath
This journey shapes us in ways that are hard to put into words. It teaches us patience, empathy and an extraordinary appreciation for life’s quiet moments. I’ve chosen to turn my journey into something bigger than myself. I’m a dedicated patient advocate and motivational speaker, traveling to various universities and events to share my life story with others in the CF community—patients, families, healthcare professionals and support networks. My mission is clear: to inspire hope, raise awareness and remind every person facing this disease that their voice matters, their story has power and they are never alone.
Advancements in CF Research
One of the most significant breakthroughs in recent years has been the development of CFTR modulators therapies that help correct the malfunctioning protein behind the disease.
For many patients, CFTR modulators have led to life-changing improvements, including better lung function, reduced hospitalizations, weight gain and for some, a return to a more active and fulfilling life. But we’re not done yet.
There are still individuals whose genetic mutations don’t respond to current modulators. There are still unanswered questions about long-term outcomes. And there are still families waiting for the day their loved ones can breathe easier, live longer, and dream bigger. This is why continued research is not only important—it’s urgent.
Every dollar invested, every clinical trial launched, every breakthrough brings us one step closer to turning CF from a life-limiting disease into a manageable condition and ultimately, to finding a cure.
The Important Role of Research and Reimbursement in My Journey
One of the most meaningful parts of my journey has been my involvement in research studies at places like the Children’s Hospital of Philadelphia and the University of Penn Medicine. Clinical trials aren’t easy. They take time, energy and sacrifice. But I believe in showing up for myself and for the generations that follow. One aspect of clinical research participation that’s often overlooked, but deeply appreciated, is patient reimbursement. This acknowledges that our time, effort and commitment matter. It helps ease the burden of participation, making it more accessible for people who might otherwise be unable to take part in studies.
In my own experience, Greenphire Patient Payments have been incredibly helpful. Through various secure payment methods – in my instance, a reloadable ClinCard debit card – participants can receive payments quickly and conveniently without the hassle of waiting for checks.
From reimbursements for gas, meals and time away from work to being paid a stipend for completing an eDiary, this has made participating in clinical trials more manageable and less stressful. It allows patients like me to focus on what matters: contributing to the advancement of CF care and treatments.
We are not just subject ID numbers in a database. We are human beings navigating daily challenges, and our participation in research comes with physical, emotional and personal sacrifice. Recognizing this effort matters. And fast, simple payments are a great way to do just that.
From Research Participant to Advocate: The Power of Story Sharing
Being involved in clinical trials has not only impacted my health, but it has also unexpectedly reshaped my purpose. One of the most pivotal moments in my journey came when I had the opportunity to share my story with Greenphire.
Speaking about my experience both as a person with CF and as someone who has directly benefited from clinical research and patient reimbursement, like ClinCard, was incredibly meaningful. I spoke about how convenient and stress-free ClinCard made the process. It allowed me to focus on my health and the research itself, rather than worrying about how I’d afford transportation, meals or time away from work. What I didn’t expect was how this single opportunity would open an entirely new door.
Finding my Purpose in the Clinical Trial Industry
After sharing my experience with Greenphire, I became more deeply engaged with the clinical trial industry—not just as a participant, but as an advocate and eventually as a contributor working directly for Greenphire. I realized that I could help bridge the gap between patients and researchers, bringing the patient perspective directly into conversations around clinical design, access, equity and diversity.
In my role as a Market Development Associate, I have the privilege of working closely with industry stakeholders to support their efforts in running more efficient, patient-centric clinical trials. Drawing from my own experience as someone living with CF, I help Clinical Research Organizations (CROs) and sponsors better understand the patient perspective and what truly matters to us, what challenges we face and how small changes can make a big impact – driving more inclusive and accessible clinical trials.
By offering insight, resources and tailored support, my goal is to help bridge the gap between clinical operations and real-world patient needs.
If you’re interested in connecting to learn more about the patient experience or explore how Greenphire’s solutions can support your upcoming studies, I’d love to hear from you. Let’s start a conversation!
Hear more about my story: Register for our upcoming webinar
Learn more: Greenphire’s patient-centered solutions
Connect: LinkedIn
Schedule time: Book a Meeting
Email: [email protected]
