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UPDATED - NEW VIDEO: Rallying for a diabetes cure in Washington, D.C.

Posted: July 13, 2009 10:53 p.m.
Updated: July 14, 2009 2:24 p.m.

President Barack Obama meets with 150 children and teenagers with Type 1 diabetes from across the United States.

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Skateboarding with friends or enjoying a cookies-and-cream frozen yogurt on a hot summer day is just a part of what Grey Monas, 11, does for fun.

But this Helmers Elementary School sixth-grader knows that summertime can also be a time to make a difference.

Monas, a Saugus resident, was one of 150 children with Type I Diabetes selected to be a United States delegate at the Juvenile Diabetes Research Foundation’s Children’s Congress 2009 on June 22-24 in Washington, D.C.

The Congress meets at the nation’s capital every two years to remind lawmakers and government officials of the critical need to find a cure for juvenile diabetes.

The sixth annual Congress meeting was the first Monas was invited to attend, and the event made an impression that will last a lifetime.

“It was really fun being there,” said Monas, who was diagnosed with Type 1 diabetes at 10 months old. “It was great to be around other kids who live with the disease every day like I do. I didn’t have to feel weird or different and I knew we were all there for the same reason.”

But the child delegates are not the only ones who know what it’s like to live with the disease.

Since its inception in the summer of 1999, the Children’s Congress has been led by the foundation’s chairwoman, Mary Tyler Moore, who has lived with Type 1 diabetes for the past 40 years.

Child delegates between the ages of 4 to 17 were selected throughout the United States to join Moore in congressional meetings and a hearing before the Senate Committee on Homeland Security and Governmental Affairs, where delegates, researchers and community and business leaders met to ask members of Congress to support an increase in federal funding for diabetes research.

Dr. Griffin Rodgers, director of the National Institute of Diabetes and Digestive and Kidney Diseases, joined Moore and the child delegates in the Senate hearing, “Type 1 Diabetes Research: Real Progress and Real Hope for a Cure.”

“We know how important research is to finding a cure,” Monas said. “It’s not fun to have Type 1, but if we can get Congress to extend the funding for more research, then we may be able to live a better life.”

The foundation had its own plans for making sure that its plea for more research was heard loudly and clearly.

Monas and other child delegates with Type 1 sang the foundation’s theme song, “Promise to Remember Me,” in hopes to extend a plan for funding past the current program’s expiration date in 2011.

Other celebrities who supported the cause and stood in front of the Senate included Nick Jonas of the Jonas Brothers, as well as boxing legend and Olympic champion Sugar Ray Leonard.

“It was so cool to see all of these people coming out to support what we were doing,” Monas said. “It felt like we were really making a difference for the future of all of us and others who have the disease.”

Until a cure is found, Monas lives with Type 1 every day and knows the challenges that come with staying healthy.

“He’s so good about checking the nutritional value of the foods he eats and is always alert to what he needs to do to stay healthy,” said his mother, Linda Monas.

Linda Monas is proud of her son’s efforts to reach out to others who have the disease.

“It’s very inspirational and touching to see him getting involved like this,” Linda Monas said.

Along with Congressman Howard  P. “Buck” McKeon, other politicians Monas and the child delegates met included another political figure: President Barack Obama.

“This is when I knew it was a big deal,” Monas said.

The foundation is the largest grassroots advocacy event held in support of finding a cure for Type 1 diabetes and has provided more than $1 billion to diabetes research worldwide.

“It’s hard to live with this disease,” Monas said. “But if we continue to think positively, someday there may be a cure. We just have to keep trying.”


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