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Gottheimer announces bipartisan ‘Cameron’s Law’ to restore Orphan Disease Research Tax Credit and to find cures for rare diseases

Named after 6-year-old North Jersey resident Cameron Hyman, whose rare disease still has no cure

NEW JERSEY — U.S. Congressman Josh Gottheimer Friday announced bipartisan legislation — Cameron’s Law — to fully restore the Orphan Disease Research Tax Credit, following the 2017 Tax Hike Bill cutting the Tax Credit in half and making treatment for rare diseases even rarer. With Cameron’s Law, New Jersey’s life sciences leaders will be able to invest more in research and development for cures for orphan diseases, which currently have no FDA-approved treatments, and grow the talent pipeline for life sciences jobs in New Jersey through training partnerships and apprenticeships.

This bipartisan legislation is named after 6-year-old Cameron Hyman from Wyckoff, NJ, who is diagnosed with the rare disease Sanfilippo Syndrome, which affects the central nervous system. Right now, there are no FDA-approved treatments for Sanfilippo Syndrome. Cameron’s Law is being cosponsored by U.S. Congressman Fred Upton (MI-6).

“We’re here this morning to announce new bipartisan legislation, called Cameron’s Law, in the fight against rare diseases that affect far too many in our great state and country — and to announce new tools to help find a cure. As we always have, New Jersey, and our great life sciences sector — and our R&D teams — can and will lead the way. Here in New Jersey, we have some of the best hospitals and medical facilities in the country — like right here at Hackensack Meridian — the best doctors, medical school graduates, nurses, and life sciences leaders,” Gottheimer (NJ-5) said.

“With Cameron’s Law, we will invest and restore the Orphan Disease Research Tax Credit to its original levels and give our best and brightest — many of them right here in Jersey — a fighting shot to find effective treatments for rare diseases and, eventually, find a cure to the most ruthless diseases that plague our families, loved ones, and neighbors,” Gottheimer said.

In 1983, the Orphan Drug Act passed with broad bipartisan support and was signed into law by then-President Ronald Reagan. Prior to the 1983 bill, only 38 orphan drugs for rare diseases had been approved for use in the United States. By 2014, through the help of the Orphan Drug Research Tax Credit and research incentives laid out in the Orphan Drug Act, 373 drugs for rare diseases had been approved.

Through the Orphan Drug Research Tax Credit, those with mesothelioma, multiple sclerosis, cystic fibrosis, and bone marrow disorders have benefitted from discoveries in labs across New Jersey and the U.S.

New Jersey is one of the leading centers in the world for life sciences and innovation, with 13 of the world’s top 20 research-based biopharmaceutical companies.

More than 372,000 New Jersey jobs are supported by the life sciences sector with $96 billion in total economic output annually. New Jersey has been ranked the number one state in the nation for biotech growth potential and the number two state for biotech strength.

Gottheimer was joined Friday at Hackensack University Medical Center by Bergen County Commissioner Ramon Hache, Hackensack University Medical Center Chief Medical Officer Dr. Lisa Tank, Hackensack University Medical Center Chair of Neurology Dr. Florian Thomas, Wyckoff residents Rob and Christina Hyman of the CAM Foundation, patient advocates Stephen and Annette Leo with their two boys, Nick and Matthew, patient advocate Pat Geurds from Handful of Hope, Eagle US EVP of Oncology & Acute Care Marketing John Kimmet, SK Life Science Vice President of Medical Affairs Lou Ferrari, and SK Biopharmaceuticals.

Jay Edwards

Born and raised in Northwest NJ, Jay has a degree in Communications and has had a life-long interest in local radio and various styles of music. Jay has held numerous jobs over the years such as stunt car driver, bartender, voice-over artist, traffic reporter (award winning), NY Yankee maintenance crewmember and peanut farm worker. His hobbies include mountain climbing, snowmobiling, cooking, performing stand-up comedy and he is an avid squirrel watcher. Jay has been a guest on America’s Morning Headquarters,program on The Weather Channel, and was interviewed by Sam Champion.

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