TCNJ

29 FALL/WINTER 2026 REGINA PHILIPPS HAD 15 MINUTES to convince a New Jersey state senator that a stalled bill deserved his attention. So she shared a video. On her phone were clips of her son, Shane: Strong and healthy as a newborn, slowly losing movement over the next several months, then beginning to regain some of what he'd lost after treatment. At 10 months old, Shane had been diagnosed with spinal muscular atrophy, a rare genetic disease that had robbed him of much of his motor function. Had his disease been detected sooner, before symptoms had appeared, treatment could have prevented his symptoms from developing in the first place. Philipps, a criminology major turned partner and civil litigator at Madden & Madden, became a mom on a mission. "I couldn't fix what happened to Shane," she says. "So I knew I had to fix the system that failed him." Using her legal training, Philipps learned of a bill that would bring SMA screening to every newborn in New Jersey. The bill had already been introduced — but was going nowhere. Accustomed to pushing past dead ends, she contacted lawmakers and helped rally more than 1,100 New Jersey residents behind the effort. The bill passed unanimously and was signed into law in January 2020. Philipps continues to share Shane's story with families facing the same unknowns. And she has spoken with students from elementary school through graduate school — including genetic-counseling students at the University of Pennsylvania — about what life with SMA looks like beyond a textbook. More recently, she became part of an NIH-funded Clinical Working Group on genomic newborn screening led by geneticist Wendy Chung, who helped develop SMA screening. The group will examine which conditions and variants should be included and how screening can be expanded responsibly. For Philipps, it all comes back to Shane. Now 8, he uses a manual wheelchair, can stand with bracing, and continues to work toward greater independence. "I tell him all the time, 'You changed the world,'" Philipps says. REGINA PHILIPPS '07 THE SYSTEM FIXER " I tell him all the time, 'You changed the world.'" — Regina Philipps Regina Philipps '07 and her son, Shane HANNAH YOON

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