Sean Recke is a caregiver, fundraiser and patient advocate. He serves these roles in support of his 17-year-old son Adam, who 11 years ago learned he had Niemann-Pick Type C (NPC) disorder, a rare, fatal, genetic disease, also referred to as Childhood Alzheimer’s.So when Sean, a Salisbury Middle School teacher, learned the second phase of a national research study of a drug that could help his son was available, he campaigned successfully with Thomas Whalen, MD, Lehigh Valley Health Network’s (LVHN) executive vice president and chief medical officer, for LVHN to become a study site.
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