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Organized by Rare Olive Org Inc
Event
JollyFest2023
Saturday, December 2nd, 4:00 PM – 8:00 PM EST
In Person
Join us for festive evening of craft beer, food, live music and Santa! Adult tickets include dinner and 4 hour open bar. Kids eat, drink and enjoy the festivities for free! All proceeds benefit RareOlive's gene therapy research project at UTSW. Can't attend but want to support? Click "Buy Tickets" and select "No thanks, I'd just like to donate"
Story
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 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.
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 Lunapark gene replacement therapy study with the Gray Lab at UTSW. Dr. Stephen Gray and team have pioneered using gene therapies to sucessfully 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 propsed clinical trial before the FDA.
We decided to plan our inaugural 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 & facepainting 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. Dress festive but warm!
In addition to the live event, we are also hosting an exciting JollyFest online auction.
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.
We are incredibly grateful to the following individuals and businesses who have helped us make this event possible:
North Pole Sponsors:
All Around Underground, LLC
Ross & Kimberly Fishkind
Evergreen Sponsors:
Daniel & Sarah McGrath
Chris Poirier & Jessica Feddersen
George & Mary Jane Reese
JBI Services LLC
Silver Bells Sponsor:
Mark Hudson Group Realty
Kelly & Dwight Yoder
John & Nicole Crowley
Michael & Patricia Grodin
We're offering three sponsorship tiers for this event. Your support helps make this event possible, and we're happy to work with you to make it a win-win.
