Kaylah Gunst recently met President Barack Obama, pop star Nick Jonas and retired boxing great Sugar Ray Leonard as part of a youthful delegation lobbying for research money to find a cure for diabetes.
Kaylah, 6, of Palmetto, who next fall will be in the first grade at Braden River Elementary, was among more than 150 youngsters from across the nation who met the president and a roster of celebrities during a trip to Washington, D.C.
She even came home with a specially minted coin inscribed with the words "U.S. House of Representatives" she got as a gift from Rep. Vern Buchanan, R-Sarasota.
Asked how she felt meeting the president, a shy Kaylah shyly said, "I liked it."
She also said she enjoyed seeing the Lincoln Memorial and playing with other kids just like her, who have been diagnosed with diabetes Type I, a serious form of the chronic, debilitating disease that affects every organ.
The visit was part of the Juvenile Diabetes Research Foundation's Children's Congress, designed to drum up support for research into Type 1 diabetes, which strikes children suddenly and makes them dependent on injected or pumped insulin for life.
Children and teens representing all 50 states took part in a Town Hall panel of athletes and celebrities affected by diabetes, individual visits for each youngster with their senators and representatives, and testimony at a Senate hearing.
"This was a once-in-a-lifetime opportunity for us," said Kaylah's grandmother, Diane Chancey, of Bradenton, who along with Kaylah's mother, Andrea Gunst, also went for the event June 22-24. "I felt we came away having met our goals."
"We are very, very involved with the organization because this disease is so devastating," said Chancey, who is a volunteer for the foundation's Southwest Florida Council, based in Lakewood Ranch.
Nick Jonas, of the Grammy-nominated, multi-platinum group The Jonas Brothers, testified on the foundation's behalf, reminding Congress about the urgent need for a cure for a disease he lives with every day, according to an account posted on the international foundation's Web site, www.jdrf.org.
"While technology has made it much easier for me to manage my diabetes, technology is not a cure. Insulin is not a cure. Like everyone here today, I know that the promise of a cure lies only in research," said Jonas, diagnosed with Type 1 diabetes at age 13. "I ask that each of you join me in supporting the renewal of the Special Diabetes Program next year so that the researchers can continue their work on a cure for our disease. My life depends on it. All our lives depend on it."
Diabetes appears in two forms: Type 1 is an autoimmune disease also known as juvenile diabetes; Type 2 is a metabolic disorder also known as "adult onset diabetes."
Sara Rankin, the local chapter's executive director, said the group emphasized the message "Promise to remember me."
"It's so they don't forget when something comes up about diabetes funding," said Rankin.
Since its founding in 1970 by parents of children with Type 1 diabetes, the foundation has awarded more than $1.3 billion for research, including more than $156 million last year, according to the foundation Web site. More than 85 percent of its expenditures directly support research and research-related education, funding more than 1,000 centers, grants, and fellowships in 22 countries, including nearly 40 human clinical trials, it said. To see more of The Bradenton Herald or to subscribe to the newspaper, go to http://www.bradenton.com. Copyright (c) 2009, The Bradenton Herald, Fla. Distributed by McClatchy-Tribune Information Services. For reprints, email tmsreprints@permissionsgroup.com, call 800-374-7985 or 847-635-6550, send a fax to 847-635-6968, or write to The Permissions Group Inc., 1247 Milwaukee Ave., Suite 303, Glenview, IL 60025, USA.
Copyright (C) 2009, The Bradenton Herald, Fla.