Thank you all for making JollyFest such a success!

Parents fighting to cure LNPK

In June 2022, Olive was diagnosed with an ultra-rare brain disease caused by a single gene mutation in LNPK (Lunapark). She was the first known case in the United States and 1 of 5 in the world. As of 2023, there are 21 known cases and 2 children have passed away from this disease. Additional children will be diagnosed as access to genetic testing improves.

Lunapark deficiency causes a severe neurodevelopmental disease with low muscle tone, absent speech and progressive epileptic seizures.

Like 95% of rare diseases, LNPK has no FDA approved treatment options. We’re here to change that.

RareOlive was founded by Olive’s mom to drive forward the research needed to treat LNPK syndrome. Our goal is to leverage the latest science to create treatments and get them into clinical trials. We’re grateful for support in any way that feels right for you.

Olive's Story


How rare is LNPK?
What is gene therapy?
Where do the donations go?
Does this help other children?
Why must we fundraise?