During a Thursday visit to Valley Hospital in Ridgewood, U.S. Rep. Josh Gottheimer, D-5th District, announced two bipartisan bills to find cures and treatments for rare diseases, as well as federal funding for an AI initiative.

The legislation, which would boost R&D for cures and treatments for rare diseases, includes:

• Cameron’s Law – A measure that fully restores the Orphan Drug Tax Credit. It’s named after 8-year-old Cameron Hyman, from Wyckoff, who is diagnosed with the rare disease Sanfilippo Syndrome, which affects the central nervous system and has no U.S. Food and Drug Administration-approved treatments. The law would create the potential for New Jersey’s life science leaders to be able to invest more in research and development for cures for orphan disease while growing the talent pipeline for jobs in the state through training partnerships and apprenticeships.

• Rare Disease Clinical Trial Pandemic Disruption Act – A bill that incentivizes clinical research halted during the pandemic by allowing any company that resumes a trial for new or existing orphan drugs that show promise and were halted during the pandemic to be granted a clawback of an additional six months of exclusivity on the specific product under consideration when it comes to market.

Gottheimer was joined by rare disease advocates, health care leaders, and medical professionals during his Rare Disease Week visit to Valley Hospital March 2 as he discussed the legislation he is introducing with fellow Problem Solvers Caucus member, Nebraska U.S. Don Bacon, R-2nd District.

“We must do more to provide hope and support to the families who struggle every day managing a rare disease, and also provide opportunities for our cutting-edge research institutions to finally get us to the desperately needed cures,” said Gottheimer. “The Rare Disease Clinical Trial Pandemic Disruption Act will encourage life sciences leaders to resume their delayed trials, ensuring research and development of critical treatments for rare diseases continues. And the tax credit in Cameron’s Law will give families the resources and hope for curing these rare diseases.

“It will give everyone more research opportunities so that we can all come together and continue to ensure New Jersey is a leader in this area,” he said.

“How could we sit there on there on the sidelines when we have a daughter at home with such a debilitating rare disease? Inevitably, we started the CAM Foundation. It’s been something that we are proud of, something that gives us some purpose,” said Rob Hyman, father of Cameron. “Of course, I’m very much honored that Cameron’s name is part of something so important like Cameron’s Law.”

An AI safety assist

Gottheimer also announced a new $600,000 federal investment for next-generation AI technology at Valley Hospital, which comes via a successful clawback.

The funding will be used to enhance Valley’s AUGi Project, AI technology that will be used to reduce patient falls and boost safety. The tech can help identify patient movements that could be dangerous and detects a patient getting out of bed faster than a traditional bed alarm. It also allows for patient monitoring, but without streaming video to protect a patient’s privacy.

A pilot program using the technology in Valley’s neurology unit saw a 28% reduction in falls resulting in injury.

Gottheimer said the new federal investment will ensure that the state-of-the-art technology is included in every medical, surgical, critical care and emergency department patient room at Valley Hospital that is currently under construction.

“This incredible technology is an extra pair of eyes for our health care workers and it’s an extra layer of protection for our families,” said Gottheimer. “I know this new technology is bringing peace of mind to so many North Jersey families who have loved ones here at Valley.”

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