Twenty years ago today. Diagnosis? Worse.
It was a Monday. I was the Director of the (at that time) JDF (now JDRF) Long Island Office. For a chapter that was not in a major city, we were hugely successful with one of the most successful chapters in the country. The volunteers (and many, now, lifelong friends) were hugely dedicated, driven, and determined to make a difference. And did!
There were no FB pages, internet, instagram, twitter, or cell phones in everyday use. We called each other on the phone. Pumps, five-second glucose readings, CGMs—no, not yet; and a new building was opening in Florida called the Diabetes Research Institute—all showed promise. Good things were ahead in the diabetes world.
Stacy came into the office Friday, I had drafted a letter (for/from her) that was being sent to a group playing at Jones Beach in an upcoming appearance in their concert series. She wanted them to say something about diabetes in their upcoming concert. I drafted the letter and while her mom leaned on the horn for her to hurry up; Stacy ran in, looked at the letter, and stated she would come in Monday to ‘fix it’. Stacy never walked anywhere, she flew. Her energy was incredibly infectious and always, the future-pediatrician-planned-high-school-student would say, something more could be done. Her name suited her; Stacy JOY. She was a direct young lady and called them as she saw them. An old man of 35 was not going to cut-it writing a letter for a 17-year-old young lady. She would fix my draft on Monday
Back to the day-Monday, April 25th 1994: I asked Hedda (our administrative assistant) to call Jane (Stacy’s mom and Co-President of the Chapter) and find out what time she and Stacy would be in later in the day. A few short minutes later I heard screaming and wailing that was so deafening that I remember to this day as real as ever. Hedda could not control herself; Stacy was gone.
I was at ‘this diabetes thing’ for just a year and half. Gone? What do you mean gone? Now, again, remember there was no instantaneous….anything; twenty years ago. I had heard people could die from diabetes, and I was sure it may have happened……somewhere. But here it was, right next to me.
The earth shattered that day. It woke me up to something I could never have expected and it changed my life forever. This ‘dying’ was just not acceptable to me. As the world became more and more connected, I would hear, with more frequency, that this could happen and does happen; rare as it is but still just as unacceptable as it was twenty years ago.
The result of that day would change the diabetes world forever because Stacy’s dad, Marc, along with his wife Esther and two good friends would begin a journey that would include funding diabetes causes, building a cabin at Stacy’s diabetes camp, and begin a worldwide search to find their best hope for a cure.
After, literally, a world-wide search they decided that the Diabetes Research Institute was worthy of their time and resources. The next few years would establish the DRI as a worldwide powerhouse in research to cure type one diabetes once and for all. Marc, and their Stacy Joy Goodman Memorial Foundation would give millions of dollars and all four of them would become board members with, for a time, seeing Marc as the National Chairman. The research for a cure never moves fast enough but under Marc’s tenure the DRI would become a worldwide powerhouse of collaboration to the one goal of curing type one diabetes.
Click here to hear Marc’s words about his daughter.
Marc’s efforts would lead to the hope for so many of us that a cure could be possible. His efforts continue today. He will be the first to tell you the long list ahead of him deserving of the credit; but that’s Marc. The apple did not fall far from the tree.
In all of the years since that April 25th, I constantly remind myself of this incredible family and their unyielding efforts to change the world. If they work so hard with only a memory to continue; who are we not to give that much more who have so much more to gain. We cannot live in this fear but respect it. It is there but should not control us. We must LIVE.
And when the band New Kids on the Block played their venue in 1994, before one of their hits, they announced they were dedicating that song to the life of Stacy Joy Goodman.
It is in the living we move on……….to this day and until a cure, because Stacy wanted it that way, she lived that way, that is how I will go about it.
You are loved Stacy, and always will be.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.
(Disclosure: I work at the Diabetes Research Institute Foundation—-but as I have stated a million times; if anyone knows someplace better where all forms of research happen in one building, collaboration is how they operate, and they have the single-minded focus to cure diabetes—-let me know because I would give my energy there instead)