Delegates Storm the Hill

For the delegates of JDRF 2011 Children’s Congress, Members of Congress are much more than just names on a ballot. Many of the young advocates have been writing letters to their legislators for years, and their visit to Washington, D.C., this June was the culmination of months of planning and preparation—beginning with an application.

The delegates are chosen by a group of several dozen JDRF volunteers, who this year read more than 1,200 applications from every corner of the country and seven JDRF international affiliates. The delegates were named in the fall, and they began preparing for their meetings with legislators, including making personal scrapbooks they would take with them to Washington, D.C., to illustrate their experiences of receiving a diagnosis of type 1 diabetes and living with the disease.

On June 21, to celebrate their arrival on Capitol Hill, the delegates joined celebrity advocate and American Idol finalist Crystal Bowersox in a recital of “Promise to Remember Me,” the official Children’s Congress song. The 26-year-old musician, diagnosed with type 1 diabetes at the age of six, also joined some of the delegates the next day in their meetings with Members of Congress and their staff. Here are just a few highlights from a highly successful day on Capitol Hill:

Speaker of the House John Boehner of Ohio met with delegates Nathan Denton, 17, Haley Palmore, 16, and Daniel Woodley, 14. Speaker Boehner played an important role in the renewal of the Special Diabetes Program, a funding commitment for type 1 diabetes research that was extended in December 2010 to provide $300 million for an additional two years.

Senate Majority Leader Harry Reid, who played a leadership role in the renewal of the Special Diabetes Program, met with Allison Christy, nine, Jacqlyn Hammel, 15, and Josie Somerlott, 13, as well as JDRF President and CEO Jeffrey Brewer and his son, Sean.

After speaking with delegate Madeline Tallman, 11, Representative John Carney of Delaware made a statement on the House floor and sent a personal letter to U.S. Food and Drug Administration Commissioner Margaret A. Hamburg, M.D., urging acceleration of the artificial pancreas, a closed-loop system which combines an insulin pump with a glucose monitor, into outpatient clinical trials.

Five-year-old Isabella Rison visited Representative James Clyburn of South Carolina, Assistant Democratic Leader and a strong supporter of both the Special Diabetes Program and progress on the artificial pancreas.

Senator Mike Crapo of Idaho, who serves on two committees that are involved with the Special Diabetes Program, met with delegate Sydney Lyon, seven, and Olympic gold medalist Gary Hall, Jr., a JDRF celebrity advocate.

Delegates from Iowa—Kyler Akers, 13, Jillian Rater, seven, and Sydney Slifka, 15—and the delegate from Israel, Ohad Levy, 13, spoke with Iowa Senators Tom Harkin and Chuck Grassley. Both senators serve on Senate Committees with important jurisdictions over JDRF interests: the FDA, the National Institutes of Health (NIH), and the Special Diabetes Program. The Iowa delegates also met with Iowa Representative Tom Latham, a strong supporter of JDRF who serves on the powerful House Appropriations Committee, which oversees the annual budget for the NIH and the FDA.

Delegate William Beebe, 14, joined Ms. Bowersox on a visit to Ohio Representative Marcy Kaptur, a senior member of the Appropriations Committee.

Delegate Lydia Harris, six, along with her parents and JDRF Board member Cynthia Ford, visited Michigan Representative Fred Upton, who serves as Chairman of the House Energy and Commerce Committee, which is currently examining the FDA device approval process, with an eye toward moving the artificial pancreas forward.

Timothy Fogarty, 10, Yvonne Fogarty, eight, Emily Maddy, 11, Kerry Morgan, 17, and Riley Trainor, 16, spoke with Virginia Senators Jim Webb and Mark Warner. Both senators have personal connections to type 1 diabetes, have supported the SDP renewal, and have contacted the FDA in support of prompt issuing of guidance on the artificial pancreas.

Children’s Congress was a first for many delegates—their first time in Washington, D.C., first tour of the Capitol building, or their first time meeting their elected representatives. For most of them, it will not be their last, and their actions as JDRF advocates will continue to have an impact that benefits millions of people affected by type 1 diabetes.