Columbus family continues to raise awareness for daughter's rare disorder.

COLUMBUS, Ohio (WCMH) -- A Columbus family is on a mission to find a cure for a rare genetic disorder and Saturday morning was their third annual Hope With Lo 5k.

“We believe that hope isn’t a feeling that it's a force. We’ve been so fortunate as we started this journey putting hope into action,” said Jake Kaufman, co-founder of Hope With Lo.

At the center of their efforts is their daughter Lola, also known as Lo. NBC4 first introduced you to them in 2023. Lo has Zellweger Spectrum Disorder. It affects her internal health as well as sight, hearing and development. There is currently no cure.

“We’re really thankful that Lo is doing as well as she is. When you get this diagnosis they pretty much tell you like we don’t know what to expect. Very few kiddos that have this diagnosis make it to adolescence,” said Sara Kear, co-founder of Hope With Lo.

Since we last saw Lo, she has hit a lot of milestones. Lo, 5, just started kindergarten and her parents said her communication skills are improving.

“Lo has been getting better and better about using communication buttons to tell us what she wants to do. To select what meal she eats or what book she reads or what activity she does,” Kear said.

For the third year, Kear and Kaufman have been hosting a 5k on Ohio State’s quad to raise money for research to hopefully find a cure. So far, they have raised more than $200,000 and Kear said that translates to around four months worth of research.

“We’re connected to the only researchers that are working on this around the world. From LA to Nova Scotia to Philadelphia and we’re able to keep a pulse on what's happening in the research community. A lot of progress is being made,” said Kaufman.

The family is excited to now see these fundraising efforts turn into action. Kear told NBC4 that there are two clinical trials in the very early stages: a gene therapy and gene editing.

“It's an incredible feeling honestly. It feels like we are able to help Lo and able to help others. I know it’s very encouraging for other families in our community,” she said.

Kaufman and Kear said none of these advancements are possible without funding and that’s what keeps them going.

“When you face a diagnosis like this, doctors telling you there’s literally no hope just go home and manage the condition as best as possible with your one year old child that feels really helpless. Literally knowing that someone is trying something brings a lot of hope and a lot of energy,” Kaufman said.