In June 2022, Olive was diagnosed with an ultra-rare neurodevelopmental disorder caused by two inherited mutations in a gene called LNPK (Lunapark). She was the first known case in the United States and 1 of 5 in the world. Olive's parents began contacting doctors and scientists who studied this disorder to understand how it progresses and what treatment options could be possible.

Lunapark deficiency causes a severe neurodegenerative disorder that causes low muscle tone, absent speech and progressive epileptic seizures. Because it is so rare, Lunapark is unlikely to receive attention from commercial biotechs, even though advances in science and gene therapies have made treating monogenic diseases possible. We're here to change that.

As of 2024, 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.

RareOlive was founded by Olive’s mom to organize and drive forward the research needed to treat Lunapark. Our mission is to leverage the latest science to create treatments and get them to clinical trials. We are currently funding a $400K Lunapark gene replacement therapy study with the Gray Lab at UTSW. Dr. Stephen Gray and team have pioneered using gene therapies to successfully treat neurological disorders. The goal of this study is to demonstrate efficacy of a gene therapy in mice, which is the first step towards getting a proposed clinical trial before the FDA.

With your support over the last two years, we have created a mouse model that replicates LNPK, developed and refined a gene replacement therapy, and scientists at UTSW are currently performing a second round efficacy testing that is showing promising initial data! This is a marathon not a sprint, and we need your support to keep this research going!

Olive's family with the team of researchers working on LNPK at University of Texas Southwestern

About Jolly Fest 🤶

We decided to plan our annual fundraiser for LNPK around the holidays, naming it JollyFest in honor of Olive's bright spirit and joy-filled nature. Olive brings a warm smile and hug to everyone she meets, and we affectionately call her Jolly Ollie. To know her is to love her. We are incredibly grateful for your support on our journey to cure LNPK.

We'll be serving craft beer, seltzer and delicious BBQ served by Lone Oak Farm Brewery. We'll have a host of festive activities including live music, crafts & face painting for kids, and Santa! Your ticket includes unlimited food & drinks, and kids are free!

Lone Oak Farm Brewery is located in a bucolic setting in the heart of Montgomery County, Maryland. The event will be held in the Branch Pavilion overlooking the farm.

The pavilion is covered and outdoors but will be heated. We'll also have several fire pits this year plus a new heated area with 3 walls.

Dress festive but warm!

Online Auction 📣

In addition to the live event, we are also hosting an exciting JollyFest online auction again this year!

Shop for holidays, book a vacation, or snag some self care with a variety of donated items available for purchase. As with the event, 100% of proceeds from the auction go towards LNPK research. Items are being added daily and the bidding begins Dec 1!

Have something you'd like to donate to the auction? Get in touch at lauren@rareolive.org.

Interested in Sponsorship? 🤲

We're offering three sponsorship tiers for JollyFest. Your generous support helps make this event possible, and we're happy to work with you to make it a win-win. You can purchase sponsorship tickets using the "Buy tickets" link above.

JollyFest 2024

Our annual holiday fundraiser to cure LNPK. Check out our auction too!