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Rare Diseases

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Support Surges For Sussex County Teen Battling Rare Brain Injury Support Surges For Sussex County Teen Battling Rare Brain Injury
Support Surges For Sussex County Teen Battling Rare Brain Injury Support is on the rise for a Sussex County teenager battling a rare brain injury. Lili was a typical 13-year-old girl who loved reading, writing, and traveling, even aspiring to become a global journalist or news reporter someday, according to a GoFundMe launched for her medical expenses. At the end of March, Lili came home suffering from a bad headache that turned out to be the result of her first seizure. “That seizure took away her ability to speak, and she suffered from paralysis, leaving her completely helpless,” reads the campaign, launched by Samantha Curran. The next several days …

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by Valerie Musson
News
Community Rallies For Philly Area Boy With Childhood Alzheimer's Community Rallies For Philly Area Boy With Childhood Alzheimer's
Community Rallies For Philly Area Boy With Childhood Alzheimer's Support is surging for a 13-year-old Chester County boy who is fighting a rare, degenerative syndrome that has been compared to Alzheimer’s. Connor Dobbyn was recently diagnosed with Sanfilippo syndrome Type C, a fatal brain disorder caused by a single missing enzyme. "Because Connor lacks this single enzyme, toxic storage material is building up in his brain every second and damaging it," Marisa DiChiacchio, his mom, wrote on a GoFundMe. There is currently no FDA-approved treatment or cure. Connor will eventually lose the ability to walk, talk, and feed himself, DiChiacchio wro…

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by Nicole Acosta
News
Where Is Jersey Mike's Newest NJ Shop? What Day Does It Open? What Time? Are You Going? Where Is Jersey Mike's Newest NJ Shop? What Day Does It Open? What Time? Are You Going?
Where Is Jersey Mike's Newest NJ Shop? What Day Does It Open? What Time? Are You Going? Bradford Fritts and Steve Korman opened their first Jersey Mike's Subs franchise in Ramsey a little over five years ago, followed by Ridgewood and Montvale. Now they're opening another. The shop will be open every day from 10 a.m. to 9 p.m. at 300 Godwin Avenue in Wyckoff, across from the Boulder Run and CVS shopping centers off Franklin Avenue.  North Jersey oldtimers can remember the original Jersey Mike's, a Shore magnet founded in Point Pleasant Beach in 1956. Now it's the nation's fastest-growing sandwich chain, with shops in Fort Lee, Wayne, Fair Lawn, Paramus, Rochelle Park, …

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by Jerry DeMarco
Schools
'Grey's Anatomy'-Inspired Research Project Wins North Jersey Student National Award 'Grey's Anatomy'-Inspired Research Project Wins North Jersey Student National Award
'Grey's Anatomy'-Inspired Research Project Wins North Jersey Student National Award An 18-year-old student from Closter is among 20 from across the country being recognized for a recent project that has the capacity to benefit society. Nicole Moiseyev won a $10,000 Davidson Fellows Scholarship for her "Grey's Anatomy"-inspired project, The Effects of the Orphan Drug Act on Rare Disease Research and Drug Development: Evidence from a Regression Discontinuity Design. "Even more so than the scholarship itself," said Moiseyev, a rising Duke University freshman, "the recognition awarded to me for my research encourages me to continue pursuing projects su…

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by Cecilia Levine