Jim Kuhn is a rare disease patient, advocate, speaker and mentor, one of the many dedicated advocates living with sarcoidosis we’ve been fortunate to meet and support through our work with the Foundation for Sarcoidosis Research (FSR).
Diagnosed in 2014 with sarcoidosis-associated interstitial lung disease (ILD), he also lives with several closely related rare conditions. His complex medical challenges have left him fully disabled since 2016.
Before his diagnosis, Jim spent more than 30 years as a successful global business leader, concluding his career with five years of full-time missionary work. Today, he is an accomplished speaker and a regular blog contributor, sharing insight into life as a rare disease warrior.
Jim and his wife of 38 years refuse to let disability diminish their joy. Living in the Greater Orlando area, he still finds ways to enjoy gardening, movies, travel and time with family. Together, they’ve learned to cherish each day and live fully in the moment.
We’re proud to support Jim and other rare-disease advocates, and are happy to provide this platform for Jim’s important message to others in the rare-disease community.
When I first began sharing my rare disease journey eight years ago as an advocate with the Foundation for Sarcoidosis Research (FSR), I didn’t know if anyone would hear me. I worried my experience was too specific, too quiet, too complicated to matter. Then one day, someone said, “Me too.” In that moment, everything changed.
In the rare disease community, stories aren’t just reflections—they’re bridges. They connect us across diagnoses, distances, and silence. Telling your story isn’t just an act of courage; it’s an act of transformation. It’s how we heal, how we teach, and how we build a community that refuses to stay unseen.
Stories Create Visibility
Rare diseases are often overlooked, misunderstood, or misdiagnosed. Sharing your story brings them into focus. It turns medical terminology into real life—lived experiences. It gives researchers urgency, caregivers insight, and policymakers context they would otherwise never grasp.
Your voice reveals what textbooks never will—and that visibility changes things. I remember that when I shared my story, and the costs of my monthly medications, with my congressman during Rare Disease Week Capitol Hill Day, he was shocked. My story helped to get my legislators on board to find better solutions for rare disease patients.
Storytelling Heals
Putting your experience into words can be grounding and restorative. It allows you to process what you’ve endured, reclaim who you are, and understand the path you’re navigating. Whether you write, speak, record, or post, storytelling honors your truth.
It’s not about being polished. It’s about being present. Healing often begins the moment we stop shrinking back and start stepping forward. Every time I share my story, I feel as if I am speaking words of encouragement and instruction to myself, as well as others.
Your Story Builds Community
Sharing your story creates space for others to share theirs. It opens doors to connection, validation, and belonging. Sometimes a single story is enough to create a ripple—someone feels seen, someone finds courage, someone begins to hope again.
Rare doesn’t mean alone. Your voice makes that clear.
Advocacy Begins with Lived Experience
Every movement begins with a story. Your perspective can educate physicians, inform researchers, and inspire legislators. It can guide support organizations, influence funding, and reshape standards of care.
Jim and Jean Kuhn, speaking at the FDA listening session on behalf of the Foundation for Sarcoidosis Research
You don’t need a podium to make an impact. You just need your truth. My story, and yours, has power; power to reach the highest levels. When I shared my experiences with the FDA, at a listening session hosted by the Foundation for Sarcoidosis Research, they began to understand the burden that rare disease has on the patient and their caregivers.
Start Your Story Where You Are
You don’t need a platform or a perfect draft. You simply need a beginning. Whether it’s a blog post, a social media update, a journal entry, or an honest conversation with a friend—your story matters.
Start small. Start real. Start now.
Your story doesn’t need to be long or loud. It just needs to be yours.
Because when you speak, you give someone else permission to speak. When you share, someone else feels less alone. And when you tell the truth of your journey, you help create a world that listens more closely to those living with rare disease.
So, start where you are.
Write a sentence.
Share a moment.
Begin the conversation.
Your voice matters.
Your story matters.
And someone out there is waiting to hear it.
About the Foundation for Sarcoidosis Research
The Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients through research, education, and support. Since its establishment in 2000, FSR has fostered over $7.2 million in sarcoidosis-specific research efforts. Learn more: stopsarcoidosis.org