Teen taking fight against Tyse 1 Diabetes to Washington

RICHBORO – Brett Rubin 13.

He looks 13. He sounds 13. He doesn’t really act 13. And he certainly has the experience of someone much older than 13.

Rubin, diagnosed with Type 1 Diabetes (T1D) when he was WhUHH, hDs EHHn fiJhWLnJ WhH GLsHDsH, OLWHUDOOy DnG fiJuUDWLvHOy, almost ever since. His mother, Sandy, is his tag-team partner in the battle and listening to them it’s hard to imagine that the disease has much of a chance.

Formerly known as Juvenile diDEHWHs, RnOy fivH SHUFHnW RI SHRSOH with diabetes have this form of the disease, according to the American Diabetes Association. That alone makes him rare. The enthusiasm with which he’s attacking it is what really sets him apart.

Like many children, he can’t and won’t be silenced until he gets what he wants. The difference is what he wants.

“Diabetes never sleeps,” said Brett, who is attached to an insulin pump 24/7. “So I can’t either.”

is While the teenager didn’t mean that literally, he still gets up during the night to check his blood sugar and administer the proper treatment, a subject in which he is an expert. He’s slowly but surely becoming an expert in talking to the right people in his never-ending quest to get what he wants: a cure for his disease.

Early next week, Brett and Sandy will travel to the nation’s capital. Brett, along with 149 other children from around the country, will be a delegate of the JDRF 2013 Children’s Congress. JDRF (formerly known as the Juvenile Diabetes Research Foundation) is the only global organization with D sWUDWHJLF UHsHDUFh SODn WR fiJhW T1D at all ages and all stages of the disease. It’s an organization with which Brett and his mom have become quite familiar.

In 2010, Brett and Sandy were part of a contingent to meet with Congressman Mike Fitzpatrick. Their goal that day was to encourage the Congressman to sign a letter to the Food and Drug Administration (FDA) urging them to speed up research and development efforts to develop new treatment of the disease and accelerate approval of new treatment technRORJLHs DnG WR finG D FuUH IRU WhH disease. Ultimately, with Brett’s urging, Fitzpatrick gave his signature – and then asked Brett to do the same.

“He asked me to sign right under his name!” Brett said. It’s a moment that will live forever in Sandy.

“Great leaders need to be heard,” said Brett’s mom. “These important people who sign important bills are hearing my son.”

The following year, the thenMaureen M. Welch Elementary School student gave a speech about living with T1D to his school. Two days later, he gave the same speech – somewhat edited for brevity – to the Council Rock School Board. Shortly after that, the school board pledged to make JDRF its charity for that school year.

Clearly, JDRF knows what it has in Brett. Reciprocally, Brett and Sandy know what they have in JDRF.

“JDRF is Brett’s family,” Sandy said. “Diabetes is 24/7. JDRF works for Brett 24/7.”

The Children’s Congress, which is held every other year, will include congressional visits by the delgates and a Senate hearing. Select delegates will join JDRF International Chairperson Mary Tyler Moore will testify to the need for continued funding for T1D. Considering his public speaking experience, the JDRF could do worse than having Brett with a microphone in his hand. Still, Brett and Sandy don’t consider the speeches, the signatures or any SDUW RI WhHLU fiJhW DJDLnsW WhH GLsease hard work. It’s simply what they do. What is hard work, Sandy said, is being a boy with T1D.

“What’s hard work is being a boy,” Sandy said. “Brett doesn’t get a lot of invitations because parents are sometimes afraid of what he can eat, what he has to do [with his daily treatment]. There are very few truly kind people.”

There are enough kind people to make up “Brett’s Band,” the name given to the group of Brett’s supporters who each year participate in the Walk to Cure Diabetes. Fitzpatrick is another member of Brett’s Band.

Brett’s continued relationship with Fitzpatrick can only help in one other way: achieving his career goals.

“I’d like to become a humanitarian,” Brett said. “I want to help people. I want to go into politics. The Congressman is helping learn about good politics and bad politics. I can make a difference.”

Ask almost anyone who’s met him: At 13, he already has.