In this case, the “someone” is actually two people—Lori and Matt Sames, the parents of three beautiful daughters in Rexford, NY, whose lives were upended four years ago when their youngest, Hannah, was diagnosed with an extremely rare genetic disorder.
The disease is known as GAN, or giant axonal neuropathy. In simple terms, it affects a certain protein in nerve cells and results in the gradual degeneration of the nervous system. It strikes in childhood, usually with symptoms like having difficulty walking; most patients die in their teens and 20s as quadriplegics, unable to move, speak or eat.
Lori had an economics degree and was a stay-at-home mom. Matt was a sales manager in television. And after the usual shock and grief, they decided they were going to find a cure for Hannah.
The story of how this family has driven R&D on GAN from almost nothing to a possible clinical trial of a gene therapy later this year is film-worthy. (You can read it here.)
From a communicator’s perspective, there is an interesting element to this story. Lori Sames found that she made little progress with doctors and researchers if she came across as a fretting mom. One researcher offered her some advice: “If you’re going to speak with scientists, you’re going to have to talk like a scientist.”
And so this worried mother of three dove headlong into an ocean of amazingly complex information, poring over every paper, every discussion, every tidbit she could find about GAN, how the body’s nervous system works, other genetic disorders that were similar, who the researchers and research institutions were, potential forms of treatment, and the head-spinning bureaucracy that often hampers both public and private medical research.
Plop Lori in a roomful of genetic scientists and watch her spout a run-on sentence filled with medical and scientific terminology that will quickly glaze the eyes of a normal human being—and light a fire of respect in her audience. She understands what she’s saying and what her audience needs to hear. And that builds the relationships and brings the dialogue that real communication (not to mention advancing science) is all about.
While Lori became a self-taught Ph.D. (which in her case she defines as “passion, heart and determination), Matt put his TV connections to work in generating public awareness and support for their nonprofit organization, Hannah’s Hope Fund. He can clearly articulate their effort in ways that connect with the average person—or the average parent.
As a communicator, I recognize the importance of things like audience research, goal-setting, measurable objectives and strategic planning. At the same time, I can’t help but wonder if sometimes we get so wrapped up in the tools of our trade that we lose sight of what we’re really trying to accomplish—building relationships, sharing our stories, creating dialogue, learning from those interactions, making a difference.
The Sames don’t care about market research or audience impressions or strategic objectives. The only metric they care about is a cure for Hannah.