HACKENSACK, NJ – On Tuesday, February 5, 2019, U.S. Congressman Josh Gottheimer (NJ-5) introduced Annette Leo as his guest to the State of the Union Address tonight in Washington, D.C. He also announced his plan to introduce bipartisan legislation to restore the Orphan Disease Tax Credit in full and ensure that diseases like Sarcoidosis remain counted as rare diseases, so that they will be eligible for the same research opportunities.

“Increasing the Orphan Disease Tax Credit is key to development of treatments for orphan diseases because it allows the researchers to maintain the capital necessary to complete their research and bring a treatment to market. Our legislation will restore the Orphan Disease Tax Credit to 50 percent of clinical testing expenses to give these rare disease treatments an even better shot at reaching the patients who so desperately need them,” said Congressman Josh Gottheimer (NJ-5). “We must keeping investing in the best scientists in the world, that are right here in America. It’s time to invest in innovation in medicine and take a chance on big ideas. It’s time to invest in caretakers and support networks that are not heroes by virtue of their birth, but by virtue of their remarkable love and tireless work for the ones they love. It’s time to invest in hope.”

Leo, of Closter, is the mother of two who have been diagnosed with Ataxia Telangiectasia (A-T), a rare, progressive neurological disorder that affects about 600 people in the United States.

The new legislation discussed by Gottheimer would restore the Orphan Disease Tax Credit that was cut in half by the federal tax bill in 2017. The legislation will be cosponsored by Congressman Fred Upton (MI-6).

Video of the event can be found HERE.