"It's Personal" by Jonathan Martin
Posted by Bryan Jones at 6:29 AM

As Director of Education and Awareness Programs for the National Marfan Foundation, I often get asked what it was that brought me into this work-- What’s my connection? There is often an assumption that to work for a non-profit health organization, I must have had an affected family member that originally peaked my interest in Marfan syndrome. Not so much…

The truth of the matter is that I was looking for a job. I was part way through my Masters program in Health Education and an advisor in the program that I was very close to suggested I check out a job announcement that she had seen for the National Marfan Foundation. I was hesitant because I had never even heard of Marfan syndrome, and thought there would be no possible way they would want me. She convinced me to look at it more from a skills and experience perspective rather than how much base knowledge I had on the disorder, and suddenly the position looked perfect for me—on paper, anyway.

For years I had been working in the field of HIV/AIDS education, spurred on by the tragic loss of friends and family members through the years. It seemed like a given that I would continue working in this arena because I felt personally connected and passionate about the work. I was concerned about going someplace that was more of a career choice than a personal commitment. But I figured I’d check it out just the same.

I interviewed with Carolyn Levering, and had a chance to meet some of the staff. I was stricken by how personable everyone was, and how driven they seemed in their work. I assumed that they must all have a deeply personal connection to Marfan syndrome to be so passionate about it. In my second interview, I met Eileen Masciale. Again, the passion and energy was apparent. It was easy to see that the organization was respectable, committed to making a difference, and on the verge of major burst of growth and opportunity after years of steady development from the grassroots up. I liked that.

While I was also offered other positions that would have been, on the surface, a more logical choice for me, I followed my heart, took a risk, and held out for a call from the NMF. I got that call around Christmas of 2000, and started in early January. I still didn’t know what to expect, or if I would ultimately find satisfaction in the work without that personal connection.

When my mother passed away only a few weeks after starting, I was deeply moved by the show of support from the staff. A beautiful flower arrangement from “Your Friends at the NMF” was the first to arrive at the funeral home in Indianapolis. I was stunned. I took a few weeks to get things in order, and came back to New York ready to give it another start.

My first order of business was to meet with some of the board who were involved with NMF Programs. In addition to Carolyn and Eileen, I met Joe Gagliano and Karen Murray. Talk about PASSION! In the months and years that followed, I have met dozens 9even hundreds) of people who continued to amaze and inspire me. Suzanne Kouri and her wonderful and energetic son Yamilito, Tom and Tracy Fitzgerald, Jeff Goldman, Jeanette Navia, the Wheelers, the Eismans, the Floyds, and so many more! Working with Julie Kurnitz on her one woman musical “Clinical Trials” at the conference in Seattle afforded me the precious opportunity to draw on my love of the theatre (I was supposed to be a multiple Tony/Oscar/Emmy winner by now, according to the plan I had laid out for myself when I was 12 years old) and use it in my work for the NMF.

Of all the people who have inspired me since joining the NMF, it is the one that I never met, although I feel like I knew him nonetheless, that has become my driving force, the key to my passion. Jonathan Larson (creator of “RENT”, and “tick…tick…BOOM”) wrote music about measuring your life in love, about making your mark on the world, about facing life’s tough decisions head on, and keeping loved ones close, and their memories closer. The tragedy of his death due to misdiagnosis in TWO hospital ERs drives me in my daily work, and working with his father Al to improve education for ER personnel has been a gift.

If ever there was a doubt that our staff is personally connected, one would simply need to have been around our office when the news that Jeff Goldman, or Julie, or Joe Neustadt had passed away. (There have been many others, but those are the ones who I personally knew and worked with.) The tears and hugs shared in the hallways showed me that this is so much more than a job for each of us. We cried, we laughed at stories, we got angry. And then, invigorated with a sense of urgency that there is always so much more to do, we go back to our desks and set to seeing what we can do not let this happen again.

So now, nearly 5 years after joining the staff of the NMF, when someone asks me what is my connection to this work, I can, with all honesty, say “It’s personal. I’ve lost friends to Marfan syndrome, and I have many others whose lives are made better by the work we do here.”
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Jonathan Martin, MS
Director of Programs
National Marfan Foundation
22 Manhasset Avenue
Port Washington, NY
(800) 8-MARFAN or (516) 883-8712 x. 16