A vision of hope

The Notre Dame community rallies to serve rare disease patients and their families through advocacy, education, and research.

You don’t know what it is to be an advocate until you are one.

That was never more clear to Harry and Gail Koujaian than when their 5-year-old daughter, Hayley, began having difficulty with motor function, verbal communication, and sight words. Then she had her first seizure.

It took six years of patient advocacy—challenging inaccurate diagnoses, meeting with doctors, pushing for medical tests, becoming “parent scientists,” scheduling surgeries, and planning regular therapy sessions—before the Koujaians would get the correct diagnosis: Niemann-Pick disease type C.