A familiar face stopped by the Capitol last week, taking the #Path2Cures from his home in New Jersey to the U.S. Senate to drop off some of his famous artwork to urge Senate support for #CuresNow. Seven-year-old Max Shill has Noonan syndrome, a rare genetic condition that prevents normal development in various parts of the body. Despite his condition and young age, Max is one of the most prolific and energetic voices for 21st Century Cures and the rare disease community. He’s captured the hearts of many on Capitol Hill through his passion for important legislation like the 21st Century Cures Act and the OPEN Act (which is a critical component of H.R. 6).

CBS Philly featured Max’s most recent visit to Capitol Hill, reporting, “Max visited 83 Senate offices across two days, leaving his original artwork at each one. A friend took care of the other 17, when Max’s legs gave out. … Max can now call himself a successful lobbyist. He convinced his own senator, Sen. Bob Menendez, D-New Jersey, to support the bill.”

One important element of Cures is making 21st century precision medicine patient-centered. By personalizing medication for kids like Max, we can ensure all patients are treated based on their unique characteristics.

Check out more pics on Facebook from Max’s visit to Washington HERE.

April 15, 2016

Local Boy Visits DC To Convince Senators To Back Bill Helping Those With Rare Diseases

Click HERE to watch the video.

WILLIAMSTOWN, Nj. (CBS) — An extraordinary boy is on a mission to help those with rare diseases. He’s back from Washington, where he met with U.S. senators to convince them to support a piece of legislation close to his heart.

Like many seven year olds, Max Schill loves to play with Legos. But the Williamstown, NJ boy also spends his free time doing something very out of the ordinary for someone his age. This week, he was on Capitol Hill advocating for a bill that could help him and millions of others with rare diseases. The 21st Century Cures Act already passed the House of Representatives.

“It was getting stalled in the Senate, and he was like, ‘We should do letters and pictures,’ so we did and he went down there and he told everybody about the cause,” said Lisa Schill, Max’s mom.

Max has Noonan Syndrome, a genetic disorder that affects how his body develops. There is no specific treatment, but if the act passes, the Schills hope that will change.

“We can do more with the science that we have,” Lisa said. “When a drug gets approved for a larger population, there’s things we can do to get that approved for people with rare diseases.”

“Maybe one day, I could get a pill,” Max said. “Before that day, I have to get shots, every, every, every night.”

Max visited 83 Senate offices across two days, leaving his original artwork at each one. A friend took care of the other 17, when Max’s legs gave out. His favorite office belonged to Sen. Pat Toomey, R-Pennsylvania. Toomey is the Senate’s official Candy Man.

“He had twizzlers, lots of chocolate, taffy,” Max said.

Max can now call himself a successful lobbyist. He convinced his own senator, Sen. Bob Menendez, D-New Jersey, to support the bill. …

Click HERE to read the story online.

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