Marianne Genetti, founder and executive director of In Need Of Diagnosis, Inc. (INOD)
My first position in the Central Florida nonprofit sector was at a little nonprofit called In Need Of Diagnosis, Inc. (INOD). INOD’s mission is to advocate for increased accuracy and timeliness in diagnosis, and to serve as a resource center for people whose illnesses have eluded diagnosis. INOD does not diagnose, but it is often possible to find alternative avenues that can lead to help.
INOD was the brainchild of Marianne Genetti, a woman who, for many years, actively sought a correct diagnosis for her motility problems. I first met her October 2010, when I interviewed for the executive assistant position at INOD. Of course, when I first walked in, I had no idea what INOD was, or even what a nonprofit looked like. Having lost my dream of becoming a journalist just over a year previous due to corporate layoffs, I had just about given up in finding a job with meaning. By the time I was done meeting Marianne that day, I was confident I had found a meaningful path with In Need Of Diagnosis.
Marianne’s openness in sharing her life experiences more than satisfied my journalistic instincts. Born in Hazleton, PA as a member of the prominent Genetti family, Marianne was truly one of a kind; Smart businesswoman, independent thinker, effective researcher, Marianne was living proof that sisters were doing things for themselves long before the feminist movement came along. I remember hearing stories of her childhood with interest: Learning about her father, her brothers and her mother, growing up in a mink farm, working as a strong single woman in Washington, D.C., going back to school at an age when most people would just as well sit in an office and be content filing paperwork, becoming a property manager, taking crash courses in medicine just so she could figure out what her doctors were failing to see. The more I listened to the stories, the more I learned about her character, her personality, her strengths and weaknesses. She lived quite a life.
Over the course of the year-plus that I worked at INOD, I became much more than an executive assistant — I was a confidant, Marianne’s right hand, and a valuable member of an organization that desperately needed some word-of-mouth. I was fortunate enough to learn from Marianne about organizations like the Genetic Alliance, NORD and the NIH as well as about the local nonprofit sector. Through INOD I made valuable connections with community leaders and I had the pleasure of introducing them to an organization with a unique mission. I was able to write proposals and nominate Marianne for awards. I got to know the board of directors very well and was an active voice for the small nonprofit with the hefty mission. Through INOD, I got crash courses in development, fundraising, marketing, public relations, donor relationships, patient advocacy, volunteer coordinating, board relations, community leadership and even a bit of medical research. Marianne made all of these things accessible and possible, and she actively encouraged me to grow to a better path.
More importantly, I became intimately acquainted with the stories of people who were not able, for one reason or another, to speak up for themselves. INOD took up the cause of undiagnosed patients all over the globe who were increasingly frustrated with a medical system that ignored them, set them aside or simply was ill-equipped to help them, and Marianne showed me that I could be a part of that. Having been myself misdiagnosed for many years, having a mother whose stage-four metastatic cervical and lung cancer was misdiagnosed as walking pneumonia, I related to the frustrations. It was my honor and privilege every day to serve the undiagnosed community.
Working with Marianne, admittedly, presented its challenges. A strong, proud and independent mind is sometimes difficult to appeal to and, with both of us having such strong personalities, there were times when we didn’t see eye to eye. These differences in opinion did not interfere with the utmost care and respect that I felt for Marianne and for her life’s work. Ultimately, after all, it was her love of this cause and her passion for the undiagnosed population that inspired my path into the Central Florida nonprofit world. Without Marianne Genetti, I would not have rediscovered meaning in my life’s work.
Marianne Genetti’s passing on the morning of March 28th was the shocking end to what turned out to be one of Marianne’s best weeks. Following a published article by the Orlando Sentinel, INOD received one of its largest donation to date as a result, no doubt an incredible accomplishment for the growing mission. Marianne was proud and excited to share in the news of INOD’s success.
Marianne’s death is more than just a loss to the Central Florida community. Real-life medical detectives all over the world have lost their greatest advocate. The undiagnosed community has lost its most prominent voice and, despite our differences, I’ve lost a mentor and a friend. As In Need Of Diagnosis moves on without its birth mother, Marianne Genetti’s legacy will hopefully continue, and it is my hope that new voices will rise up on behalf of the thousands of people suffering from illnesses eluding diagnoses all over the globe, so that they may one day finally find the relief that Marianne so longed to find herself.
Please donate to In Need Of Diagnosis today to keep the mission alive, and spread the word about its important work. Learn more and donate at http://www.inod.org today.
It’s been a while since Elephant Words has seen a new post. I’ve been grouping and regrouping on a personal and professional level, but now more than even I have been feeling the tug in my heart to get back to telling the stories of people, organizations and campaigns that matter. Here’s one of those campaigns.
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