November Cure Champion

Ella and Karen McChesney

Karen McChesney

I don’t remember life before type 1 diabetes (T1D), and still go back and forth contemplating: Is it better to be diagnosed young, to grow up used to the disease so that your entire world isn’t turned upside-down with the diagnosis, or better to have some diabetes-free years that you remember—perhaps a more “normal” high school experience or carefree Saturdays.

By the time I was diagnosed at age 5, my sister Lauren (8 years my senior) had already had diabetes for a decade. My family had been participating in the Walk to Cure Diabetes and volunteering at JDRF’s Gift Wrap booth for quite some time, so in the same way diabetes has always been part of my life, JDRF has as well. “The Walk” holds a special spot in my childhood memories, a day I looked forward to each fall.

A few years ago at the Walk I spoke at length with a family friend who happens to be a big-time advocate for JDRF. As long as we’d been involved with JDRF fundraising, I hardly knew anything about the Advocacy side of things, and I was eager to get involved.

Soon after, that friend invited me to participate in one of the Promise meetings she told me about. I was nervous at first, but felt empowered leaving the Representative’s office—I could tell we’d made an impression on him. I walked into my next Promise meeting with my sister Lauren and 7-month-old niece Ella. I listened with pride as Lauren told Senator Scott Brown that her pregnancy required more effort and monitoring than those of her friends without T1D, but with the help of her amazing team at the Joslin she’d given birth to a healthy, happy baby and was now successfully balancing her diabetes care with motherhood.

A few months later the unthinkable happened—Ella was diagnosed with T1D. With new motivation in the form of a niece whom I adored to pieces, I put my emotions to work by becoming more involved in Advocacy.

I was lucky enough to attend my first Government Day this year and was amazed at all the people who came together from all over the country for the event—some whose connections to T1D weren’t even a spouse or child! I was able to learn the details of the work JDRF funds like the Artificial Pancreas, Encapsulation and Smart Insulin and hear from experts in the field. We then got to meet with legislators and their Health Aides in their offices on the Hill.

A few months ago I was offered the position of Advocacy Team Chair of the New England Chapter, which I was honored to accept. I look forward to working with more amazing people with T1D and their families as we spread our message to decision-makers to continue funding groundbreaking research.

I’ve decided that I don’t need to spend any more time pondering whether it would be better for those of us who live with T1D and only know life with this disease to have been diagnosed at an older age. Instead, I’ll focus on how amazing it’s going to be to think back on the days of endless finger pricks and injections once a cure is found. When life without diabetes is our new normal. I know that with the work JDRF is doing, that day will be a reality before we know it.

To learn more about JDRF’s Advocacy efforts, visit http://advocacy.jdrf.org.