WASHINGTON, DC – Today, seven-year-old Max Schill from Williamstown, NJ, met with U.S. Senator Bob Menendez and his Chief of Staff Fred Turner to discuss his efforts to raise awareness about rare disorders and the need to encourage the development of new treatments and cures for these challenging and often heartbreaking conditions. At the meeting, Menendez thanked Max for his advocacy efforts and announced his co-sponsorship of the OPEN Act (S.1421), bipartisan legislation proposed by Sens. Hatch and Klobuchar which will hopefully be considered as part of a wide-ranging medical innovation bill the full Senate may consider in the coming weeks.

“It was a real pleasure to meet with Max and his mom and discuss the importance of having a world-class healthcare system that is always equipped with the best tools to solve every challenge. The level of leadership and dedication demonstrated by this young and brave New Jerseyan is nothing short of inspirational, and I’m proud to represent him and the rare disease community across the country,” said Sen. Menendez. “As the Senate works towards approving a legislative package to accelerate the pace of cures and medical breakthroughs in our country, I will continue to work diligently in the hope of improving our healthcare system through inventive medical research so that individuals like Max and his family don’t have to face overwhelming obstacles to accessing innovative, quality treatment options. The stories New Jerseyans share with me often help guide policy and bring about needed change in the way Washington can work better, and the power of Max’s voice will certainly have an impact here in Capitol Hill.”

Max Schill was born with Noonan syndrome, a rare congenital disorder characterized by heart defects, short stature, learning problems, sunken chest, impaired blood clotting, and characteristic facial features. Noonan’s is a RASopathy, which are related disorders that are all caused by gene mutations that affect the RAS family of proteins. Both Max and his mom Lisa, V.P. of RASopathies Network USA, appeared before the House Energy and Commerce Committee last year at the markup of the 21st Century Cures Act.

Since the beginning of this Congress, there has been a push to pass a wide-ranging legislative package that focuses both on spurring medical research and creating new pathways to development and approval of drugs. The House passed their version, the 21st Century Cures Act (H.R. 6) last summer which included the OPEN Act, legislation that promises to rapidly bring hundreds of safe, effective, and affordable medicines to rare disease patients by incentivizing drug makers to “repurpose” approved drugs for the treatment of life-threatening rare diseases.

The Senate HELP Committee recently held a series of markups to pass out their “Innovations Package” of bills that ostensibly will be combined together on the floor, which will hopefully include the OPEN Act, and possibly be voted on during this work period or the next.

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