Two Hundred Children with Diabetes from Across America Head to Washington D.C. for Children’s Congress 2003

Juvenile Diabetes Research Foundation
Thursday, 1 May 2003

Child Delegates Testify at Senate Hearing on Juvenile Diabetes

Nearly 200 children from throughout the U.S. have been selected to make an emotional pilgrimage to Capitol Hill later this year to remind Congress and the Administration of the critical need to find a cure for a disease they live with every day— juvenile diabetes.

Children with juvenile (type 1) diabetes—ages 2 to 17, representing all 50 states and the District of Columbia—will converge on Washington, D.C., to tell their stories and urge lawmakers to help find a cure during the Juvenile Diabetes Research Foundation International (JDRF) Children's Congress 2003, June 22 to 24. Children's Congress, led by JDRF International Chairman Mary Tyler Moore, will include Congressional visits by the child delegates and a hearing in the Senate Committee on Government Affairs where Ms. Moore, select child delegates, researchers, and business and community leaders will testify on the need for continued funding for research on juvenile diabetes.

The President and Laura W. Bush are Honorary Co-Chairs of Children's Congress 2003; Congressional Co-Chairs are Senator Susan Collins (R-ME), Senator John Breaux (D-LA), Representative George Nethercutt (R-WA), and Representative Diana DeGette (D-CO).

Ms. Moore and the child delegates will thank Members of Congress for passing the Special Juvenile Diabetes Research Program, and ask them to support the Pancreatic Islet Cell Transplantation Act of 2003, and a 10 percent increase in overall funding for medical research at the National Institutes of Health.

"The moms and dads who founded JDRF knew that insulin injections were not the cure for their children with juvenile diabetes. But just like the Wright Brothers knew man could fly, JDRF's families knew there had to be a way to replace the insulin-producing islet cells destroyed by this disease, and they committed their resources toward that end," said Ms. Moore, who has had juvenile diabetes for more than 35 years.

"Today, islet transplantation is one of the more promising approaches to achieving a cure for juvenile diabetes—but, because the current state-of-the-art requires a lifetime of immunosuppression, it is not appropriate for use with our children and most adults. Significant additional research is needed to make the procedure safe and available to all who might benefit, including me and our Children's Congress delegates. Sustained growth in funding for research and passage of the Pancreatic Islet Cell Transplantation Act are key pieces of the puzzle needed to turn islet transplantation into a safe and viable cure for the well over 1 million Americans with juvenile diabetes," she added.

JDRF is the largest charitable funder of juvenile diabetes research worldwide, second only to the U.S. government. As a result of JDRF funding, advocacy, and leadership, there have been significant recent breakthroughs in type 1 research, putting us within reach of a cure.

Rik Bonness of Omaha, Nebraska, is Chair of Children's Congress 2003. Along with his wife, Shannon, and sons, 15-year-old Alex and 17-year-old Eric, both of whom have juvenile diabetes, they serve as the designated Chair Family.

"When our delegates share their personal stories about juvenile diabetes and all that they have to endure on a daily basis, it greatly helps elected officials understand why finding a cure is so critically important," said Mr. Bonness. "The children's mantra is ‘Promise to Remember Me', but delegates do such amazing job at putting a human face on a very misunderstood disease, elected officials don't have to promise to remember these kids, they will remember them."

Children's Congress has been held every other year since 1999; it has become the largest media and grassroots event held in support of finding a cure for juvenile diabetes. A once-in-a-lifetime experience, the newly-selected child delegates will follow in the footsteps of their predecessors in raising national awareness about juvenile diabetes and participating in personal advocacy at the highest level of United States government.

In juvenile diabetes — the most serious and complicated form of the disease that accounts for some $132 billion in annual health care costs in the U.S. alone — a person's pancreas stops producing insulin, the hormone that enables people to get energy from food. To survive, people with juvenile diabetes must test their blood sugar four or more times a day by pricking their fingers for blood, and then administer themselves insulin through multiple daily injections, or the use of a continuous infusion insulin pump. While trying to balance insulin with the amount of food eaten (which raises blood sugar) and exercise (which lowers blood sugar), people with juvenile diabetes must constantly be prepared for potential hypoglycemic (low blood sugar) and hyperglycemic (high blood sugar) reactions, which can be life-threatening. The devastating long-term complications of diabetes are blindness, heart attack, kidney failure, stroke, nerve damage and amputations. While usually diagnosed in childhood, it is also diagnosed in adults.

The Children's Congress is part of an overall JDRF program, Unite to Cure Diabetes. In June 2003, the Juvenile Diabetes Research Foundation International launches Unite to Cure Diabetes, a two-year national public awareness and fundraising campaign to support JDRF's mission: finding a cure for diabetes and its complications through the support of research. Taking place June 21 through 24 in Washington, D.C., key events such as the Launch Walk to Cure Diabetes and Children's Congress, as well as dinners to be held at foreign embassies in the Washington area, will kick off the Unite to Cure Campaign. With this combination of events, JDRF aims to promote juvenile diabetes awareness and increase government research funding as never before, and we thank those sponsors named below who have joined us in this special initiative.

JDRF, the leading charitable funder and advocate of juvenile (type 1) diabetes research worldwide, was founded in 1970 by the parents of children with juvenile diabetes – a disease which strikes children suddenly, makes them insulin-dependent for life, and carries the constant threat of devastating complications. Since inception, JDRF has provided more than $600 million in direct funding to diabetes research. In a typical year, 85 percent of JDRF's expenditures directly support research and research-related education. JDRF's mission is constant: to find a cure for diabetes and its complications through the support of research. For more information, visit the JDRF web site at www.jdrf.org or call 800-533-CURE.

Unite to Cure Diabetes National Presenting Sponsor: LifeScan, Inc., a Johnson & Johnson Company; National Sponsor: Becton, Dickinson and Company; National Sponsor: Delta Air Lines; National Sponsor: Medtronic MiniMed.

For more information, or to contact Juvenile Diabetes Research Foundation, see their website at: www.jdrf.org