Our story

In June 2022, Lauren Flickinger's daughter Olive was diagnosed with an ultra-rare 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 gross and fine motor issues, absent speech and in 75% of patients, progressive, debilitating epileptic seizures. Children with Lunapark syndrome have severe, complex disabilities and require 24-7 support from their families, 1 on 1 aides at school and multiple specialists to manage their medical care. Amidst their challenges, these beautiful children also bring immense joy to their families with silly personalities, sweet smiles and joyful laughs.

As of 2026, there are 25 known cases and 2 children have passed away from this disease.

The two known US Lunapark families met for the first time last summer

The research

Because Lunapark is ultra-rare, it is unlikely to receive attention from commercial biotechs. However, advances in science and gene therapies have made developing a treatment for this disorder possible. With your support, RareOlive.org has changed the trajectory of a breakthrough for the families living Lunapark Syndrome.

Our mission is leveraging the latest science available to create treatments for Lunapark and get them to clinical trials. We have funded over $550K in groundbreaking research for this disorder with Dr. Stephen Gray at UT Southwestern. His team pioneered using gene therapies to successfully treat neurological disorders their work has resulted in approved and ongoing human clinical trials to test gene therapies for Rett Syndrome, Giant Axonal Neuropathy (GAN), Tay-Sachs, Sandhoff, Spastic Paraplegia Type 50, and Batten Disease. It is through advocacy and your support that Lunapark Syndome in the hands of these incredible scientists.

Olive's family and the team researchers working on LNPK at UT Southwestern

We've never been closer

After 3 years of relentless work on LNPK gene therapy in mice, the research team at UT Southwestern has made significant progress.

We have learned that LNPK is dose-sensitive. We need safe levels in individual cells AND broad delivery throughout the nervous system, an important scientific understanding made possible by your support. The team has solved the initial safety challenge with a gentler gene therapy promoter, and now they're using advanced delivery technology to reach more cells for better efficacy. The initial results in treated LNPK mice show improvements in both movement and activity. We hope that by the end of 2026, we will have an IND-enabling efficacy data that we can bring to the FDA and advance to the next stage of drug development, manufacturing this treatment for safety testing and a clinical trial for our children.

This careful work -- testing, learning, and optimizing before advancing to the more costly manufacturing phases of drug development -- is essential to building the foundation we need for clinical translation.

This is what hope looks like: persistent, systematic, science-driven progress that gets us closer to a treatment that works. We are incredibly grateful for your ongoing support to keep this research going for Lunapark children.

We appreciate your support in any way that feels best to you: sharing, donating or simply cheering us on. It all makes an impact. 🙏

Rare Disease Day 2026: Lunapark Syndrome

You can support groundbreaking research for families this rare disease day

Team Members