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JDF Washington Report
Volume II, No. 14
July 1, 1999

First JDF Children's Congress an Unprecedented Success!

Last week, the first ever JDF Children's Congress (see www.jdf.org and see Washington Report No. 13 ) was an incredible success! One hundred child delegates and their families arrived in Washington, DC for three days of advocacy, education, friendship and securing commitments from Capitol Hill to find and fund a cure for diabetes. JDF is currently following up with Congress, the Administration, media, chapters, volunteers and the public to bring you a comprehensive summary of the event, but following are some highlights from the very emotional and powerful JDF Children's Congress.

Monday, June 21, 1999

The delegates met with Secretary of Health and Human Services Donna Shalala to share with her their experiences about the challenges of having diabetes in school and at home. The delegates were asked about how their teachers, coaches and peers treat them. Specifically, Secretary Shalala asked the delegates if they had one message for the President, what would that be? Responses included: "Insulin is not a cure." "Kids shouldn't have to think about death at our age." "I don't like shots!" "Please give research more money so we can find a cure." "Show me the money!"

The children ranged in age from two to seventeen years old. Secretary Shalala "promised to remember" the children by assuring the delegates that she would take their messages to the President directly.

Tuesday, June 22
Congressional Hearing on Juvenile Diabetes

The JDF Children's Congress delegates also participated in a special Congressional hearing held before the Senate Appropriations Subcommittee on Labor, Health and Human Services and Education focused solely on juvenile diabetes. This Subcommittee is responsible for deciding how much funding will be provided to the National Institutes of Health, a $15.6 billion federal agency that supports medical research. JDF underscored the need for Congress to provide sufficient funding to implement the recommendations of the Diabetes Research Working Group.

At the standing room only hearing filled with families impacted by diabetes, media, congressional staff and others, the 100 JDF Children's Congress delegates sat directly in front of the Subcommittee to listen to the testimony of several panels of witnesses. Those testifying at the hearing included Senate President Pro Tempore Strom Thurmond (R-SC), who has a daughter with juvenile, or Type 1, diabetes, JDF International Chairman Mary Tyler Moore, JDF National Celebrity Advocate Tony Bennett, JDF Children's Congress co-chair Alan Silvestri, and the following JDF Children's Congress delegates: Zephyr Straus (age 2) of Emerald Hills, CA (with help from Dad, Jim); Stockton Morris (age 9) of Haverford, PA; LaNisha Patterson (age 10) of Germantown, WI; Mollie Singer (age 10) of Las Vegas, NV; and Will Smith (age 13) of New York, NY. NIH Director Harold Varmus and National Institutes of Diabetes and Digestive and Kidney Diseases Director Phil Gorden also presented testimony.

The JDF witnesses spoke of their personal stories and the need to increase medical research funding overall and specifically for diabetes research. All of the testimony is available on the Senate Appropriations Committee website at http://www.senate.gov/~appropriations/labor/test.htm. Among the Senators who attended the hearing were the following: Senate Labor, HHS, Education Subcommittee Chairman Arlen Specter (R-PA), Ranking Member Tom Harkin (D-IA), Larry Craig (R-ID), Patty Murray (D-WA), Ernest Hollings (D-SC), Harry Reid (D-NV), Connie Mack (R-FL), and Herb Kohl (D-WI). During introductory statements and question and answer sessions, several senators indicated their interest in seeing that funding is available to support every diabetes research opportunity, a position supported strongly by JDF.

"Promise to Remember Me"

Following the emotional hearing was the debut of the song "Promise to Remember Me" performed by the children on the US Capitol steps. JDF Children's Congress Family Chair and Academy Award nominated composer Alan Silvestri co-wrote the song and introduced the theme song to hundreds of well wishers gathered at the steps. Joining the Silvestri Family and the children were Mary Tyler Moore, Tony Bennett, CNN Talk Host Larry King, Miss America 1999 Nicole Johnson, New York radio personality Beth Bacall, and JDF Children's Congress Congressional Co Chairs Representative George Nethercutt (R-WA) and Senator Harry Reid (D-NV).

Congressional Luncheon

Following the song on the Capitol steps, all delegates and families arrived in the Cannon Caucus Room in the House of Representatives to participate in a Congressional luncheon. The delegates had the opportunity to meet with their Representative or Senator to discuss diabetes research funding and life with diabetes. The JDF Children's Congress Congressional Award was given to Senator Strom Thurmond (R-SC) and presented by his daughter, Julie, who has Type 1 diabetes. The delegates and the celebrities used the event to put a human face on juvenile diabetes. Tony Bennett broke out into impromptu song (I Left my Heart in San Francisco) as he thanked the crowd for being there.

Media Coverage

JDF generated a great deal of national, regional, and local media coverage for the JDF Children's Congress. Thus far, we've had over 200 stories on television already. Mary Tyler Moore, JDF's International Chairman, appeared on the Rosie O'Donnell Show, Larry King Live, Good Morning America, and CBS This Morning. CNN Headline News and CNN Morning News widely covered the entire event. Three of our Children's Congress delegates appeared on Good Morning America the day after the Congress concluded and we had great local TV news coverage of delegates that aired in their local markets. Newspaper clips from major papers across the US are still coming in and we are in the process of completing a summary of those clips. Some highlights include: Los Angles Times, Washington Post, Chicago Tribune, Houston Chronicle, Arizona Republic, Dallas Morning News, Philadelphia Inquirer, Kansas City Star, Star-Ledger (NJ), Atlanta Constitution, St. Louis Dispatch, Milwaukee Journal Sentinel, Sun-Sentinel (FL), Des Moines Register, Columbus Dispatch, Fortworth Star Telegram, Omaha World Herald, San Antonio Express News, Hartford Courant (CT), Cincinnati Enquirer, Honolulu Advertiser, Rochester Democrat & Chronicle, News Journal (DE), The State (SC), The Clarion Ledger (MS), Knoxville News Centinnial, Albuquerque Journal, South Bend Tribune (IN), Idaho Statesman, Lincoln Journal Star. What a story!

What Next?

Many people who are concerned about finding a cure for diabetes are asking "What next?" We collected over 25,000 letters written by children to go to Members of Congress! Please continue to write! All of you on the Washington Report email list should expect an ALERT in the coming weeks to urge you to contact your Members of Congress about increased diabetes research funding. JDF is already in the planning stages of the next Children's Congress due to the great success of this first event. Congratulations to the delegates, their families and friends, and to all who care about finding a cure for diabetes through the support of research!

Juvenile Diabetes Foundation - Government Relations
1400 I Street, NW #500
Washington, DC 20005
1-800-JDF-1VOTE ex. 5 (800-533-1868)
www.jdfcure.org
mthreatt@jdfcure.org

Posted 2 July 1999



                 
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