This Saturday, May 22nd, the Promise Ball at the Loews Hotel will honor Lee Ducat, the founder of the Juvenile Diabetes Research Foundation, for her lifetime dedication to finding a cure for type 1 diabetes. As many as three million Americans live with the autoimmune disease, in which a person’s pancreas stops producing insulin, a vital hormone that enables people to get energy from food. Two of my siblings—I’m one of five kids—are among them.
I had the amazing opportunity to speak with Lee about her work with JDRF and how it all started, right here in Philly. In the first year, working out of her home in Penn Valley, Lee raised $10,000. Now, JDRF raises $100 million annually and has raised $1.4 billion since its inception 40 years ago.
Whether or not you or a loved one has been touched by type 1, Lee is an amazing, amazing example of what one woman—what one mother—can do when she puts her mind to it. Check out our Q&A below.
So tell us about your experience. Were you living in Philadelphia at the time your son, Larry, was diagnosed with Type 1?
When Larry was diagnosed at age 9 I was living in Philadelphia, and soon after we moved to Penn Valley.
And what was that like for you guys? How did you feel? How did your son feel?
I don’t know what your parents went through, Jenna, but for parents it’s devastating to know that one day their child is a healthy, normal child and then in a moment, with the diagnosis, there’s a whole world that emerges; you have a child with a chronic disease that they don’t know the origin of, nor is there a cure. But there is a treatment that will keep him or her alive and that’s insulin and that’s the miracle of insulin—that it keeps our children alive. But there’s no guarantee that they will not get the complications of diabetes, the deterioration of some of the organs systems like the eyes, kidneys, and the cardiovascular system. So it’s a huge worry for parents and a continuing worry as the kids get older and live with diabetes in an ongoing way.
You’ve devoted your life to finding a cure for type 1 diabetes. How long after your son, Larry, was diagnosed did you start JDRF and what was that like for you?
After Larry was diagnosed we were all in shock. This disease affects the whole family, as you well know, Jenna. It affects the sibs who are not diabetic, it affects the parents, the grandparents, the cousins—the diagnosis of diabetes affects everyone in the family. So the first year I wore dark glasses and cried a lot. Somehow nearing the end of the first year when we had the regime down pat and I knew how to inject him with insulin and he was injecting himself, we knew how to measure the insulin, and we knew how to balance exercise with the diet, I came to the realization that I had to do something about it. So when I brought him to his doctor, which was Doctor Robert Kaye at Children’s Hospital, I said to him, “Bob, I wanna do something about this. I don’t want Larry to spend his whole life injecting himself and worrying about going into shock or a coma as he grows older.” I had heard of people going blind rather suddenly and their kidneys not functioning, so I shared with the doctor that I wanted to change things. I wanted to help make life better if I possibly could.
What did he say?
He said, “Well, Lee, we’ve gotta get more money for research. I think if we funded enough research, somewhere we would find new treatments and a cure.” So I went home very energized and decided to do something about it. There were other diabetes organizations, but they were mostly physician organizations. And this is 1970—very few people knew that children got diabetes and everyone thought that if they did get diabetes, that insulin was a cure. So the first thing we had to do was let everyone know that insulin was not a cure for diabetes, it allowed the kids to live, but a precarious life, and a life full of treatment, a life that was dominated by this disease and the worrisome complications that might or might not come.
How did you get things rolling?
We started the organization at my home. I did not know how to build an organization, but I didn’t worry about it too much. I did know how to give a cocktail party, so I gave a party at my home and by that time we had moved to Penn Valley. Dr. Kaye opened his patient list, which was unheard of, and I invited everyone on his patient list to my home. About 60 people came and I had little membership applications which I had drawn—my kids had helped me—and everybody joined. And that was the beginning of the Juvenile Diabetes Research Foundation.
How long did it take for things to become more official?
A little bit later on, my husband and his partner, who had built Duffield House in Philadelphia and a few other apartment buildings, gave me an office and telephones and equipment and we were on our way. The first year we raised $10,000, and we started some other chapters. We got publicity, my son and I were interviewed by magazines and newspapers, and the word disseminated through the country. Before long we had 60 chapters across the country. We had a board of directors and a scientific advisory board, and we were certified as a 501C3 non-profit voluntary health organization.
What an amazing story. It gives me chills to think that one person can do so much if they just decide to do it.
Well, you know, it grew like top seed. And as it grew, it was almost like I was covered with Velcro, because people joined and got attached and we got wonderful, wonderful, able parents involved and people who could fund raise and give money to research so the effort multiplied so fast. That was a testimony to the numbers of diabetics that were out there and the families that were affected and that needed help so badly, they were all over the country, and wherever these families were, somehow they got word that we had started here in Philadelphia and a chapter grew in Washington, DC, Cherry Hill, New Jersey, Los Angeles, California, so we started to get chapters throughout the country. Then we went to the diabetes organizations meetings in Europe and we started international chapters there.
What was it like to meet so many other families struggling with this?
We clung to each other because we were each others’ initial help. When my son came down with diabetes, there was no one to talk to, no one to share with, no Juvenile Diabetes Research Foundation. It was a very dark world because your physician only has enough time to treat the patient, but there are so many questions about the diabetic type of life and you need people to ask questions with and to share information with. So we were able to set up a network of parents and families and diabetics around the world who can help each other. I often say that if did nothing else, that would have been enough.
What else do you want people to know about Type 1 diabetes and how can they get involved here in Philly?
Well, the most important thing is for people to be aware of the symptoms, so that if their child has extreme weight loss, thirst, general malaise, lack of energy, they should get them to a doctor immediately because it probably is a diagnosis of diabetes. And the funding for research needs to be increased. So even in these times, we are all digging down deep to give. There are some countries around the world that have unbelievable numbers of diabetic patients. Especially in the Scandinavian countries.
How far away do you think we are from a cure?
Well, nobody really knows that. But there’s so much going on, and I think that’s what we’re commemorating this week. We’ve planted the seeds of research all over the world, with over a billion dollars funded into diabetes research that will bare fruit. That will grow soon. I think it will happen in a small lab somewhere, just like the discovery of insulin—which was found in a small lab in Toronto in the 1920s. Two young scientists hit on the fact that insulin could affect blood sugars and saved millions of lives by that discovery. Someday the sun’s going to rise on a world without diabetes—and that’s what we keep hoping for.
Jenna Bergen, health & fitness editor