Local Boy Attends White House Ceremony, Vows To Fight For New Law

WILLIAMSTOWN, N.J. (CBS) -- With the stroke of a pen, President Barack Obama signed perhaps one of his most important and possibly last pieces of major bipartisan legislation under his watch.

A little boy from Williamstown, New Jersey was in the room when Obama signed the 21st Century Cures Act. It will invest approximately $6 billion for cancer research, and opioid abuse, among other related goals.

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"It was really exciting to see the president," Max Schill told Eyewitness News.

Schill is 8-years-old and he has Noonan Syndrome, a rare genetic disorder that affects how his body develops as he ages. We introduced you to Schill last April around the time he made his rounds on Capitol Hill to fight for the "Open Act." It was aimed at repurposing drugs for rare diseases. He visited 83 senators in just two days. He even convinced the two U.S. Senators from New Jersey to get on board.

Though the "Open Act" provision did not make it into the new law, White House officials wanted Schill at the ceremony.

Now, Schill plans to fight specifically for the Open Act, aimed at disorders like his. He's taking some time off for the holidays, but you can bet you'll see him back in on Capitol Hill next year. He's excited and feeling great.

"On a scale of 1 to 10 I'd say 100!," he said.

To see our previous coverage on Max Schill, click here.