LINCOLN, Neb. -  The theme in Lincoln this weekend is raising awareness.

Awareness for a rare disease. The Batten Disease Support and Research Awareness conference is in Nebraska’s Capitol city, as families from around the country get information and support.

“We host families, researchers, and clinicians and other interested professionals like industry partners… We have about 250 people in Lincoln this weekend and we’re just very excited to be here.”

Amy Fenton Parker is the President and CEO of the BDSRA Foundation, and says the event aims to help families connect and learn about Batten disease—a rare, fatal genetic disorder affecting children, causing vision loss and cognitive and motor decline.

Friday featured seminars and booths, with former Husker Football Coach Bill Busch as keynote speaker. Parker emphasizes the importance of raising awareness beyond the Batten community.

“From this we gain research, we gain physicians, we gain interested individuals who want to fund research and help the families,” Parker said.

And one of those families, calls Eagle, NE home. Stacy and Terry Thorne are the parents of seven-year-old Ollie, who was diagnosed with Batten Disease at the age of three. Ollie’s life began like every other kid, laughing, loving life, and playing baseball, until a seizure began a trend.

“He had fallen the weekend before, so we thought maybe he had a skull fracture from the fall so we figured that’s what causes the first seizure, but then he had a second one, and a third,” Stacy Thoene said. “We actually were meeting with the neurologist and she recommended we have a genetic dest… About a month later, we found out he had CLN2 Batten Disease.”

Ollie’s dad, Terry, says he had never heard of Batten disease until his son's diagnosis—and when he began researching it, the emotional weight set in.

“It was rough,” Thoene said. “I don’t know how long I cried, but it was pretty long… And after that you just try to do what you can.”

The Thoene’s then began Ollie’s Purpose, a community effort of support, which includes a golf outing and a 5K to generate funds for research. While Ellis unable to speak, the Thoene’s say he’s still joyful… Initially hesitant, the Thoene's now feel at home at BDSRA conferences.

“We were hesitant to go to the first family research conference, because you’re almost afraid to see the future,” Stacy Thorne said. “But we went and it’s just a happy place, it’s like going to a family reunion.”

Nebraska Gov. Jim Pillen declared June 9, “Batten Disease Awareness Day” in Nebraska, but Parker says more can be done to raise awareness through all levels of government.

“We need accelerated access and we need funding for research,” Parker said. “If people are interested in supporting Batten Disease, I encourage them to get in contact with their representative. You can start local and work your way up, and BDSRA is happy to help with that if needed.”