January 25, 2024; Alec Koujaian receives a hug from his mother Gail at their home in Prospect Heights, IL. Alec has Niemann-Pick Type C (NP-C) disease and is going through a series of treatments with an experimental drug at Rush University Medical Center in Chicago. In 2020, Alec’s sister, Hayley Koujaian, passed away from NPC at the age of 20. (Photo by Barbara Johnston/University of Notre Dame)

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January 25, 2024; Alec Koujaian receives a hug from his mother Gail at their home in Prospect Heights, IL. Alec has Niemann-Pick Type C (NP-C) disease and is going through a series of treatments with an experimental drug at Rush University Medical Center in Chicago. In 2020, Alec’s sister, Hayley Koujaian, passed away from NPC at the age of 20. (Photo by Barbara Johnston/University of Notre Dame)

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