Charitable Fighting

On episode 41 of the Juicebox Podcast, host, Scott Benner talks with the JDRF’s Director of Discovery Research, Albert Hwa, about some of the current and promising research the JDRF is doing. During the interview Benner posses an almost rhetorical question, “What’s the last thing we cured as a society? Is it polio?”

This question hit me hard, maybe because I was pulling into the drugstore parking lot to get yet another month’s supply of insulin and test strips. We’ve never told our son that his diabetes will be cured. I don’t count on type 1 diabetes being cured in my lifetime, or his. I hope it will, and it’s wonderful to hope and support the goal of curing diabetes, but I think it’s dangerous to promise a young child with diabetes that his or her disease will be cured.

If Henry grows up believing that his disease will be cured in five or twenty years and it isn’t, how will this affect his feelings toward the organizations, scientists, and doctors who are working on a cure? I’ve heard so many people and families affected by T1D talk about turning away from charities, organizations, and even their own self-care, because at diagnosis, medical professionals and organizations said a cure was on the horizon in X years. And after X years arrived, there’s no cure.

When Henry asks if he will have his diabetes forever, we tell him yes. In general, when “yes” is a harder answer than “no,” the question is serious. We tell Henry that he’ll have his diabetes forever, but that it will get easier to have T1D because doctors and scientists are working really hard on ways to make diabetes hurt less and be easier to take care of.

If you follow diabetes research, you’re well aware that people have strong opinions about the JDRF, The Faustman Lab, and other organizations. The stakes are high and charitable giving is limited, so it’s natural that opinions butt heads. Shorty after our son’s diagnosis, I was on the phone with our local chapter of the JDRF. I’ve read about the promising trials going on at the Faustman Lab, and I was in the room when Ed Damiano released the iLet this summer. Some people gasped, and others who’d been living with diabetes for decades began to cry, and in my own anticipation for Henry to have a better life, it struck me that this is one of the many ways hope arrives.


Photo Credit: Jeff  Hitchcock, Friends for Life

When Banting first conceived of insulin, it’s rumored he was in a semi-intoxicated state, preparing for a lecture on metabolism in the wee hours of the morning, while in a less than prestigious lecturer position. He was largely working in isolation without much support. Lightening may strike twice, but I’m not counting on the next diabetes breakthrough to emerge from isolation and without support.

I don’t know if the next advancement in diabetes care will be islet transfers, beta cell encapsulation, or related to immunotherapy. I do know that it’s important that my son sees us supporting the people who work everyday to make his life easier.

This week, Semisweet donated money to the Bionic Pancreas, the Faustman Lab, and started Team Henry for our local JDRF One Walk. We added a Donate page to provide more information about diabetes research. Please consider joining us in one of the causes.

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