My Journey to the FUTURE Conference with LEMS
By: Maria, Volunteer and Patient
As a nurse, I’ve attended my fair share of medical conferences -with rows of booths, panel discussions, clinical updates, and plenty of coffee. But this year, something was different. I wasn’t just attending as a healthcare professional. I was showing up as a patient.
In August, my husband, Aaron and I traveled to Kansas City to attend the FUTURE conference, hosted by the American Academy of Family Physician (AAFP).
I was there on behalf of the LEMS Family Association, an advocacy group for people living with Lambert-Eaton myasthenic syndrome (LEMS), a rare neuromuscular disorder that, until one year ago, I had never even heard of, let alone imagined that it would alter my entire world.
This trip marked many firsts for me: my first time attending a conference as a patient, my first time working a booth to educate others about LEMS, and—perhaps most personally significant—my first time meeting another LEMS patient face-to-face.
A New Perspective
Stepping into the exhibit hall felt familiar at first. The clinking of lanyards, the buzz of conversation, and the sea of promotional pens and pamphlets. But this time, I wasn’t gathering CEU credits or hunting down new clinical guidelines. I was there to share my story.
At the LEMS Family Association booth, I had the opportunity to talk with dozens of family physicians, medical students, residents, and even a few specialists. Many had never heard of LEMS before, or only remembered it from a textbook. But every conversation opened a door—an opportunity to help someone recognize the signs earlier, or to think outside the box the next time a patient presents with unexplained weakness or fatigue.
The Power of Connection
The highlight of the conference for me was meeting another LEMS patient, Tracy, in person. Meeting someone who truly understood—without needing a medical explanation or background story—was indescribable. We shared experiences, symptoms, treatment journeys, and laughs that only another LEMS patient could appreciate.
Aaron and I also enjoyed meeting June, Tracy’s wife. It was wonderful to hear her perspective on LEMS and see their supportive relationship in action. It was so inspiring to hear about all the places they have traveled to raise awareness of LEMS.
In a condition as rare as LEMS, that kind of connection is priceless. It reminded me why advocacy matters—not just for awareness, but for the emotional survival of people living with rare diseases, to know you are not alone in your struggle.
Looking Ahead
Going forward, I hope to attend more events like this. Raising awareness about LEMS, advocating for patients, and offering support to others has become an unexpected but deeply meaningful part of my life. The FUTURE conference gave me a platform—and a purpose. I encourage my fellow patients to think of ways you can help build our LEMS community and volunteer with the LEMS Family Association.
The future is brighter when we come together.