An event being held Saturday at noon will attempt to promote Rare Disease Day and specifically Lennox-Gestaut syndrome, or LGS. Seven local families with a family member suffering from LGS, which causes grand mal seizures, have joined together to promote awareness. Submitted photo

Once alone as a family looking for answers, the Davisons are now raising awareness about the rare disease known as Lennox-Gastaut syndrome with six other local families.

Darla and Dan Davison’s son, Aaron, suffers from LGS that had previously carried with it an estimated 50 major grand mal, or tonic-clonic, seizures each month.

But through use of medical-marijuana products, the family reported a reduction in seizures inflicting their son to about two per month last year.

Twelve months after the initial success of canabidiol, or CBD, treatment, the family is attempting to better inform the public about the rare condition and how to treat it.

“We have seen families that have pooled together that have one of those rare diseases,” Darla Davison said.

On Saturday, a large group of LGS families and supporters will gather in solidarity of Rare Disease Day in attempt to further raise awareness.

“This whole epilepsy community is underfunded,” she said. “There’s not nearly the amount of research out there that there should be. We need new treatment options to try. Most families have been through everything you can try and then go back through round two.”

At noon, members from the seven families will be present at the main entrance of the Chautauqua Mall to walk several laps within the building to promote their cause. Those in attendance are welcome to donate, with all proceeds going to LGS Foundation which supports awareness and research efforts. Donations to families can be made at firstgiving.com/team/398695.

“The awareness, community support and raising funds for research,” Darla Davison said as to what she hopes will come from Saturday’s event.

While the Davison family has found success using the Food and Drug Administration approved Epidiolex, the CBD product, to reduce their son’s output of seizures, Darla Davison admitted that treatment is likely different for every individual person. She noted that some of the families are using CBD while other are using alternative methods. A few are using a ketogenic diet that is minimizing the amount of seizures occurring.

“This diagnosis is notorious for having the same (treatment) that works for every body,” Darla Davison said, adding that her family spent years trying to figure it out.