January 26, 2024: After his treatment, Alec Koujaian shares a video on his cellphone of him singing karaoke with pediatric coordinator Samantha Dreyer, a 2023 graduate from Notre Dame with a bachelor’s in neuroscience and a minor in science and patient advocacy at Rush University Medical Center in Chicago. Alec has Niemann-Pick Type C (NP-C) disease and is going through a series of treatments with an experimental drug. In 2020, Alec’s sister, Hayley Koujaian, passed away from NPC...
more »

January 26, 2024: After his treatment, Alec Koujaian shares a video on his cellphone of him singing karaoke with pediatric coordinator Samantha Dreyer, a 2023 graduate from Notre Dame with a bachelor’s in neuroscience and a minor in science and patient advocacy at Rush University Medical Center in Chicago. Alec has Niemann-Pick Type C (NP-C) disease and is going through a series of treatments with an experimental drug. In 2020, Alec’s sister, Hayley Koujaian, passed away from NPC at the age of 20. (Photo by Barbara Johnston/University of Notre Dame)
« less