RareOlive.org Information

In June 2022, our daughter Olive was diagnosed with an ultra-rare brain disease caused by a mutation in a single gene called Lunapark (LNPK). She is the only known case in the United States, and among 4 in the world. After speaking to dozens of doctors, scientists and parents in rare disease, we learned the unfortunate truth. Parents of kids like Olive must blaze their own path. RareOlive was founded to do just that — we’re driving forward the research needed to treat this disease and help kids like Olive. We are grateful for support in any way that feels right for you.