Fundraising For Diabetes: Why We Walk.
On Sunday I attended an awards ceremony for the Juvenile Diabetes Research Foundation‘s (JDRF) Walk to Cure Diabetes in Philadelphia.
I was reminded why our family participates in the Walks. It was moving to see pride on the children’s faces as they received their golden sneakers and team awards, and equally moving to see tears in other parents’ eyes as speakers talked about diabetes.
We walk to remember we are not alone with this disease and to remind ourselves how much work is being done to revolutionize the way we live with diabetes. We walk because we believe diabetes will not be forever.
This year my son decided he would be our Walk team captain. He helped write the letter to possible donors; he invited people to walk with us; he designed a t-shirt and he handwrote over 60 thank-you notes. According to Josh (and JDRF), the money raised at the walk pays the scientists and researchers who are working to cure diabetes and its complications. Josh gained some organization and fundraising skills but most importantly he learned how friends and family are more than willing to walk with him and support him.
It was a powerful reminder to us that Josh will never be alone in his efforts to overcome diabetes. We manage to control diabetes everyday and by raising money for research we increase our power over this disease.
So where has the money gone this year, and what have we gotten for this investment? At times I feel cynical – no cure yet! I refuse to be patient in the pursuit of better treatments and ultimately a cure.
However, when I take a deep breath and put cynicism aside, I’m exhilarated by research breakthroughs and what JDRF is funding. Here are just three things that really excited me this past year:
- First, the identification of the genetic mutation that causes a rare version of monogenetic diabetes which is found in a handful of children diagnosed as infants. Monogenetic diabetes presents very much like type 1 diabetes, but its treatment is oral medication instead of insulin injections. It affects only a very small percentage of children (less than 20 have been identified in the US).
- Second, I’m ecstatic about the movement of anti-CD3 compounds into drugs that might inhibit the progression of diabetes and block further destruction of islet cells in newly diagnosed type 1 diabetics – basically keeping them in the early diabetes honeymoon and maintaining whatever natural insulin production is left. Five years ago when Josh was diagnosed, I called Dr. Kevin Herold’s lab at Columbia University and begged to get him into the anti-CD3 clinical trial, but Josh was too young. I’m amazed where this research has gone in five years! JDRF helped fund the risky and expensive early stage tests at MacroGenetics and Tolerex and now major pharmaceutical companies with deep R&D pockets have come on to continue the drug development. Eli Lilly has partnered with MacroGenetics to continue testing of teplizamab, and GlaxcoSmithKline has partnered with Tolerx to work on otilixumab. I hope JDRF will keep the fire burning under these pharmaceutical giants so this work continues to move forward. It potentially could revolutionize how type 1 diabetes is treated at diagnosis.
Finally, closing the loop and truly making an artificial pancreas with the merger of an accurate continuous glucose monitor and an insulin pump really excites me. I heard JDRF researcher Aaron Kowalski speak about the successes in this area and his enthusiasm is contagious. I was particularly pleased to hear about the closed loop trials (pairing a continuous glucose monitor with an insulin pump) with children at Yale University. I could write more here, but instead I recommend reading the January 3rd interview that Amy Tenderich did with Dr. Kowalski for Diabetesmine.
We will keep participating in the Walk because it gives our family hope and an opportunity to take action. To see 10,000 people in one place walking, cheering and dominating diabetes is awe inspiring. Yes, these kids have diabetes but they are not stuck, they will not be stopped and together they will walk on and make many changes. I challenge the scientists and researchers to do the same.