people who have been diagnosed with a rare disease often are faced with no treatments and no cures Health Care leaders and Advocates say more funding is needed to boost research and development efforts in order to discover life-changing treatments at an event at Valley Hospital this week marking rare disease week Congressman Josh gottheimer announced two bipartisan bills that he says will incentivize more research in rare diseases as Ted Goldberg reports for one father of a child diagnosed with a rare disease the bills offer hope for his child and others my story began on July 26th of 2018 when I was called into an office the first times I had ever heard that word San felibo syndrome were from the doctor telling me that my that my daughter had it Rob Hyman's daughter suffers from a rare degenerative disease San felipo syndrome affects one in every 70 000 newborns leading to Children losing learned skills and generally cutting their life expectancy to fewer than 20 years Rob's daughter Cameron was placed in a clinical trial and given gene therapy had she not been treated I think she would have lost more skills by now she still can go to school now it's a lot of hand over hand and there's always somebody with her helping her but she's able to make it through a school day and I think that she's better off for it we're making great progress in these fronts but we have a long way to go San felipo syndrome affects fewer than 200 000 Americans so it's classified as a rare disease that's the subject of two new bills introduced by Congressman Josh gottheimer more than 90 percent of rare diseases still have no FDA approved treatment rare disease research is critical because not only can it lead to a cure or treatment for those inflicted but the research can also be a gateway to breakthroughs for other treatments and cures as well the idea behind these bills is to give companies incentives to continue research that was paused during the pandemic only 12 percent of all drug research projects lead to a go-to-market drug so what happens is expensive right it's it's really taken a lot of shots on goal and hoping that one of them goes in right but you got to keep taking those shots you'll be able to afford to take those shots one of godheimer's bills would give companies longer exclusivity to sell drugs for a rare disease the other Bill named for Cameron would restore the so-called orphan drug tax credit which gives companies tax breaks for research and development against rare diseases restoring these funds will help New Jersey's life science leaders invest more in research and development it will allow positions such as myself the opportunity to provide life-saving treatments to patients who have conditions that represent a small portion of the population the 2017 tax hike Bill gutted our state local tax deduction and sent us in the wrong direction on many fronts including cutting the orphan drug tax sorry the orphan drug research tax credit in half making treatment for rare diseases even rarer literally by cutting in half they made orphan drugs even more of an orphan in the five years since his daughter's diagnosis Rob started the cam Foundation which spreads awareness of San felipo syndrome while raising money to help find a cure he says bills like these could lead to a better quality of life for folks like his daughter that's very encouraging because we weren't in a very fruitful place to begin with and I think we can get to it bigger and more uh and more and more productive research and development world for our disease and all other rare diseases as well godheimer's bills are bipartisan giving them a better chance to pass and possibly giving patients of rare diseases a better Outlook in Ridgewood I'm Ted Goldberg NJ Spotlight news