Letter from Leadership: Mary Tyler Moore

Mary Tyler MooreThis year marks JDRF’s seventh Children’s Congress. I find it inspiring that the very idea for Children’s Congress came from a child with type 1 diabetes. In 1999, eight-year-old Tommy Solo of Massachusetts heard his mother talking to a group of adults about going to Washington, D.C., to petition Congress for more funding for type 1 diabetes research, and he thought, “Why shouldn’t kids talk to Congress instead?” He made the suggestion to his mother and a close friend, and the adults were smart enough to see that children such as Tommy could be the most persuasive representatives for this devastating disease. Every two years since then, children have taken their message to Congress in what has become one of the largest advocacy events in Washington, D.C. This June, JDRF had the honor of hosting 155 delegates, ages 4 to 17, from across the United States and seven other countries. Although I was unable to attend as I had planned, my testimony was included in the public record, and in my heart and mind, I was standing proudly with the delegates every step of the way.

I’d like to offer my personal thanks to this year’s Chair Family: Stefany Shaheen and Craig Welch and their daughter 11-year-old Elle Shaheen. The Shaheen family’s boundless energy and enthusiasm for JDRF advocacy served as an inspiration to all of us, and I deeply appreciate their dedication to making every aspect of Children’s Congress a success.

The voices of the 2011 delegates were heard loud and clear on Capitol Hill, as they celebrated the three-day event on June 21 by singing the Children’s Congress anthem, “Promise to Remember Me.” The song was led by a special guest delegate, American Idol finalist Crystal Bowersox, who has lived with type 1 diabetes since age six. Crystal joined some of the delegates—including the delegates from her home state, Ohio—in their visits to their members of Congress, with whom they shared their stories of exactly what it’s like to grow up with a disease that never lets you take a break.

At the Senate hearing, “Transforming Lives through Diabetes Research,” hosted by Senators Joseph Lieberman and Susan Collins, a panel of senators heard testimony from delegates and adult advocates on the greatest needs of the type 1 diabetes community. In the testimony I submitted for the record, I offered, as International Chairman of JDRF, our sincerest gratitude to Congress for its tireless support for the 2010 renewal of the Special Diabetes Program, which comprises 35 percent of the federal type 1 diabetes research budget. The Special Diabetes Program has enabled crucial research on therapies that could change the lives of millions of Americans.

Particularly exciting is the significant progress made on the Artificial Pancreas Project, a focus of the Senate hearing. In clinical trials in the inpatient setting, artificial pancreas devices have been shown to significantly reduce the occurrence of dangerously low blood sugar levels that are such a great cause of concern for all of us, and often scare us enough in the immediate term that we let our blood sugars run high, putting us at greater risk for long-term complications including diabetic eye disease, kidney disease, neuropathy, and heart disease. Kerry Morgan, a 17-year-old delegate from Virginia who has personally experienced the benefits of an artificial pancreas device in an inpatient trial, testified that it is time to move development forward by approving protocols for outpatient trials. Her unequivocal endorsement of this research was echoed by the testimonies of the other delegates as well as by my fellow JDRF advocate, Kevin Kline, whose poignant remarks represented the hundreds of thousands of parents of type 1 children who spend their nights worrying and their days advocating for better treatments and a cure.

I am pleased to report that our efforts are truly advancing type 1 diabetes research and the translation of that research into benefits for our loved ones at the point of care! This includes advancing FDA approval for new therapies and devices. As a result of JDRF leadership and the strong bipartisan interest in Congress for new technologies for those with type 1 diabetes, the FDA is working on a set of guidelines for out-patient clinical trials of artificial pancreas devices. At the Senate hearing, the FDA committed to having a draft of these guidelines for public comment by December. Once these guidelines are finalized, researchers can take the next step and test these devices in patients at home with the ultimate goal of having safe and effective artificial pancreas devices available for all people with type 1 diabetes sooner rather than later.

In addition to the excitement the delegates experienced on Capitol Hill, they also had a wonderful opportunity to hear from role models who have type 1 diabetes but have not let it derail them from achieving their dreams. U.S. Supreme Court Associate Justice Sonia Sotomayor, Olympic gold medalist Gary Hall, Jr.; Amazing Race winner Natalie Strand, M.D.; JDRF scientist and New York City Marathon runner Aaron Kowalski, Ph.D.; NFL Super Bowl champion Kendall Simmons; and LPGA golfer Carling Coffing each gave inspiring talks and answered questions from the delegates. Their message was unanimous: if you can learn to manage your type 1 diabetes, find your passion, and work hard, you can achieve great things!

I am also deeply grateful to the Children’s Congress corporate partners, without whose extraordinary support Children’s Congress would not be possible. At a special luncheon on June 21, Children’s Congress Chair Stefany Shaheen, JDRF chairman Frank Ingrassia, and JDRF president and CEO Jeffrey Brewer honored the contributions of Children’s Congress sponsors Advance Auto Parts, Ford Motor Company, Eli Lilly and Company, Delta Air Lines, Medtronic Foundation, and LifeScan.

Congratulations to all our delegates! You are all heroes—for speaking out, for representing millions of others, and for being partners with JDRF, and with me, in making a difference. Your efforts at Children’s Congress will not be forgotten, and I hope that you will continue to fight for your own future and for the future of all of us with type 1 diabetes.