Start With Why!
It was March 28th 2018…
It’s 3 o’clock in the morning and besides the overnight staff at Tufts Floating Children’s Hospital, I’m the only one awake. My wife, Liz, and I have been tag teaming for the last few hours. It’s important that one of us be awake for our son, Liam.
It has already been three days since Liam’s Juvenile Myositis (JM) diagnosis and the results of IV steroid treatment have thus far been remarkable. But our road ahead is still unclear. As I lay at the foot of Liam’s hospital bed with my legs crunched into a nearby chair, I come across a blog post written by an 18-year old girl with Juvenile Myositis. She speaks candidly about her journey with the disease and helps me understand what Liam might be going through. Since Liam was only four when his symptoms appeared, it had been difficult for him to explain what he was experiencing. The young woman’s perspective shed light on what it’s like to live with JM.
As I reread that blog post, I remember making a conscious decision to do whatever I could to help raise awareness about this incredibly rare and devastating disease. I knew then, that I would use my skills in media, marketing, creativity and hustle to assist other families stricken by JM.
In many ways, my family has been lucky. We live in Boston, a city with rich resources in the field of medicine. We were able to get to a diagnosis in only a few months. For many families, it can take years before a proper diagnosis is received. The undiagnosed period is confusing and devastating. Your child is suffering and you don’t know how to help. As my wife and I faced our challenges with Liam’s diagnosis and treatment, I realized that broad range awareness about JM was a marketing challenge and an area where my professional expertise and personal connections could make a difference. This is why we decided to create CureJM4Liam.
That night in the hospital, I decided to treat Liam’s diagnosis as the catalyst for a marketing campaign to raise awareness about JM and shine a spotlight on our personal story. Who could I reach effectively and how could we tell our story, bringing others along on our journey? My professional experience had shown me that unique charity events, social media tactics, traditional media exposure and collaborative partnerships would be the way and Liam was our “Why”. I drafted a 4-page document, outlining my ideas and my wife and I continue to use that document to this day as our roadmap for CureJM4Liam…
Our why is simple…Liam.
Our how is this: Collaborate with our JM community, educate our business contacts about the disease, be fearless in sharing our story and drive results everyday to help the next child in their undiagnosed period connect with the Cure JM Foundation for support.
Why, because a Cure Can’t Wait.
What’s your why?
