Jersey mom fights for her daughter inside a congressman's D.C. office

WASHINGTON -- Armed with a photo of her eldest daughter and a personal story to tell, Kristin Camiolo sat down with her congressman and his aides to seek support for the bill that brought her to the nation's capital.

"The reason I came is my daughter Genna," Camiolo told Rep. Leonard Lance, R-7th Dist.

Camiolo was part of a group of mothers (and a few fathers) who came to Washington at the behest of the St. Baldrick's Foundation, a private group that raises millions of dollars to fund childhood cancer research.

"Mom, you need to go do this," Camiolo recalled her youngest daughter, Rosie, 15, telling her. "It's important."

So this high school teacher and mother of three from Warren Township took the train to Washington to add her voice.

"Organizations like to have somebody like that helping them out," said lobbying expert James Thurber founder of American University's Center for Congressional and Presidential Studies. "They're quite effective because they speak from the heart and the sorrow of the situation that they're in."

Camiolo was there to push for passage of Childhood Cancer Survivorship, Treatment, Access, and Research, or STAR Act, which supports funding for research and for support for survivors who may have after effects from cancer treatments as they grow into adulthood.

"I can't believe I'm getting excited over legislation," Camilio said before the meeting. "Here, we can do something. I can't do science. I can tell people our story."

That's the story of Genna, diagnosed with a brain tumor at age 6.

Genna attended chemotherapy sessions rather than first grade and underwent another round of treatment a couple of years later. The tumor damaged her vision but the treatment eventually shrunk and hardened it.

Today, she is 19 years old and attends Raritan Valley Community College with  dreams of becoming a preschool teacher's aide.

Camiolo, wearing a gold and gray ribbon to symbolize both pediatric cancer and brain tumors, found a receptive audience in Lance, an early co-sponsor of the legislation that passed the Senate in March and is now pending before the House Energy and Commerce health subcommittee that he sits on.

"You have my support, and more importantly, advocacy before the subcommittee so this can move forward," Lance told Camiolo.

He pointed out that he had another way to get to the health subcommittee chairman, Rep. Michael Burgess, R-Texas.

Lance turned to his right, where his senior health policy adviser, Robert Butora, was sitting. He pointed out that Butora, a New Jersey native, formerly worked for Burgess.

The measure has 364 House sponsors, including most of the New Jersey congressional delegation. In the Senate, both U.S. Sens. Cory Booker and Robert Menendez, D-N.J., signed on. Camiolo earlier met with aides to both senators.

"This is not a partisan issue," Lance said. "It's not even bipartisan. It's nonpartisan."

Another New Jerseyan, Christina Loccke of Montclair, undertook a similar mission Tuesday, seeking legislative support for the National Commission on Scleroderma and Fibrotic Diseases Act, which would study and make recommendations for the treatment of such diseases.

"I think it's a fine balance between telling your story and asking for help," said Loccke, a freelance writer. "You sort of have to remember to do both. It can be very emotional at times. You're talking about what was a very dark time."

Loccke's 11-year-old daughter, Claudette Johnson, is being treated for scleroderma and accompanied her mother to meetings with Senate aides and Rep. Rodney Frelinghuysen, R-11th Dist. No one from New Jersey has yet co-sponsored the legislation, but four lawmakers recently signed on.

"There are instances where this direct lobbying can be incredibly powerful and incredibly effective," said Matthew Hale, a Seton Hall University political science professor. "Some one who is directly affected by whatever the issue is, that's a voice most congressmen want to listen to."

Jonathan D. Salant may be reached at jsalant@njadvancemedia.com. Follow him on Twitter @JDSalant or on Facebook. Find NJ.com Politics on Facebook.

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