VINTON–Matthew Butler will be an eighth grader at William Byrd Middle School this fall. If he is asked to recount how he spent his summer vacation, part of his story will be the days he spent in July speaking with members of Congress in Washington, D.C.
Butler, along with about 150 other young people ages 4 to 17, were members of the JDRF Children’s Congress who represented the international diabetes organization at a Senate hearing.
According to JDRF, “They were in the nation’s capital to remind Congress and the Administration of the critical need to find better treatments and a cure for Type 1 Diabetes (T1D).”
“I want to tell my Congressmen that people with T1D are real people, not just a statistic on a piece of paper,” said Butler. “We all want to have normal lives and not live under the shadow of diabetes. We need to find a cure.”
Their goal was to talk with lawmakers about the challenges of living with T1D and the need for continued research to eliminate those challenges. “International delegates joined those from all 50 states and the District of Columbia to convey the message that diabetes is a global problem that requires a global effort.”
The Children’s Congress has been held every other summer since 1999. The program was inspired by eight year old Tommy Solo from Massachusetts. He overheard adult JDRF volunteers talking about going to Congress to speak with lawmakers and thought it would be even more powerful if children could also go along and ask members of Congress to remember the young people who live with T1D when they make decisions about medical research issues and funding.”
Delegates visit their own members of Congress and then attend a Senate hearing during which delegates, researchers, and celebrities testify on the need for continued funding for T1D research.
This year’s delegates were chosen from a pool of 1500 applicants and were accompanied generally by one parent each. Both of Butler’s parents, Mary and Brian, were able to attend.
On July 7, the family took Amtrak to Washington and joined the other delegates at the JW Marriott Hotel, where all of the delegates and celebrities stayed for the event.
The next day there was first a “meet and greet.” Crystal Bowersox, of American Idol fame, taught the delegates their “Promise to Remember Me” theme song. Later there was a banquet where all of the young people introduced themselves and told when they were diagnosed.
On July 9, a Town Hall meeting was scheduled so that the delegates could meet with the celebrities in attendance and ask them questions about coping with T1D. This year’s celebrities included actresses Mary Mouser and Jean Smart, chef Sam Talbot, Aaron Kowalski, leader of the artificial pancreas project, Indy Car Driver Charlie Kimball, journalist Leslie Adkins, sportscaster Brian Kenny, Miss America 1999 Nicole Johnson, and Olympic swimmer Gary Hall who all have diabetes, in addition to NBA star Ray Allen, whose son has the disease.
Afterwards, they received training on talking with their Senators and Representatives about dealing with T1D on a daily basis, the difficulties they face that their peers don’t, and the future lives they hope to live.
They reviewed a letter from Diana DeGette and Ed Whitfield, members of the House of Representatives, that they would ask lawmakers to sign, pledging support for continued funding of research studies and human clinical trials accelerating progress towards curing, treating, and preventing Type 1 Diabetes, including artificial pancreas technologies, immune therapy drugs, and stem and basal cell treatments.
On July 10, the delegates traveled to Capitol Hill, where the hearing took place in the Dirksen Senate Office Building, led by Senator Bill Nelson of Florida, chair of the Special Committee on Aging, along with Senator Susan Collins of Maine, co-chair of the Senate Diabetes Caucus.
The hearing, “Diabetes Research: Reducing the Burden of Diabetes at All Ages and Stages,” focused on the daily burden that T1D places on Americans living with the disease, including the 150 young Children’s Congress delegates seated in the room.
Testimony was provided by Jeffrey Brewer, JDRF President and CEO, NBA Champion Ray Allen, actress Jean Smart, and several Children’s Congress delegates.
The committee members were told that it is estimated that 26 million Americans have diabetes—3 million with Type 1—and that the incidence of T1D rose 23% among those ages 20 and younger between 2001 and 2009.
According to the JDRF, “In T1D, a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. People with T1D need to test their blood sugar, give themselves insulin multiple times every day, and carefully balance insulin doses with eating and daily activities throughout the day and night. However, insulin is not a cure for diabetes, and even with that intensive care, a significant portion of the day is still spent with either high or low blood sugar, placing people with T1D at risk for complications such as heart attack, stroke, blindness, and amputation.”
The economic impact of diabetes was also discussed. A recent study shows that diabetes costs are expected to more than double to $512 billion by 2020. The study’s authors argued that if Congress continues to support funding for diabetes research, breakthroughs in reducing the incidence and severity of T1D become more likely, potentially saving taxpayers billions of dollars.
Allen described how T1D has affected him as a father to six-year-old Walker, a Children’s Congress delegate.
“The Miami Heat played 106 games this past season,” Allen said. “We had game days, practice days, travel days, even a few off days—days to rest, to heal, to rejuvenate and recharge. But, for our son Walker and any family living with T1D, there are no off days. We dream of a day when Walker can leave this disease behind. With the continued support of Congress for the Special Diabetes Program, with the investment of JDRF and the private sector, and with the dedication and commitment of the families surrounding us today, and tens of thousands of others around the country, we will create a world without T1D. We have to.”
JDRF believes that not only is research improving treatments for diabetes, they believe they are close to discovering a cure and are afraid of funding cuts at a critical time.
Vice President Joe Biden joined the entire group for a photo session during their visit to the Capitol.
“Diabetes doesn’t define you; it doesn’t define who you are,” said Biden.
On the day of the hearing, Children’s Congress delegates met with Virginia legislators. Senators Mark Warner and Tim Kaine expressed their support for the cause. Delegate Robert Hurt, who ran on a platform to cut spending, pledged to study the issue.
According to Brian Butler, Kaine spent quite a bit of time with the delegates, asking questions about the causes of diabetes and current treatments and research.
Earlier in the week, at a sponsors’ luncheon, Matthew Butler presented an award to Advanced Auto for their contributions to diabetes research as they are headquartered in Roanoke.
The days were long for the young delegates, but there was time in the evenings for the pool and socializing with new friends. Butler said the best part was meeting the stars who deal with the same issues he does.
Matthew Butler became a JDRF volunteer just weeks after he was diagnosed at age 6, participating in his first JDRF Walk. Over the years, Matthew has raised $23,000 for JDRF research.
His slogan is “I like to say that I have T1D—it doesn’t have me.”
More information is available about the local Greater Blue Ridge Chapter of JDRF at www.jdrfgreaterblueridge.org/. The Greater Blue Ridge Walk to Cure Diabetes is scheduled for September 22, 2013 beginning at the Transportation Museum.