Lori said when she dove into the science of GAN, it "was like peeling an onion" and took perseverance to understand everything. What she found out wasn't a lot, but it fueled her desire to make more information available.
"We realized the science is there to treat many of these ravaging, rare disorders, but funding and attention to these disorders is what's absent. We then realized our potential to save these kids and then had a feeling of panic when we realized how much money we needed to raise " but we're doing it," she said.
Hannah's Hope Fund is the only organization in the world devoted to GAN. By providing a network of support and hope, Lori has brought families from the U.S., Belgium, Scotland, Germany, France, Canada and beyond, together.
"Whenever a family finds us and sends a picture of their child, you just weep and immediately fall in love with these families and children. It is a heavy burden because so many families are depending on us to secure funding and help find answers," Lori said.
People personally affected by GAN and others who aren't devote time and energy to running and growing Hannah's Hope Fund. Having so much help allows fundraisers and events to occur that would otherwise be impossible.
"It's really moving when people choose to get involved and really choose to step out of their comfort zone and take more on. We're all so busy with careers and children and trying to have quality family time, yet people are adding more to already busy plates to help," said Lori.
Ritch Adams is one such supporter. He met Hannah's family at an event last summer. Their drive and dedication are why he's a board member of Hannah's Hope Fund.
"It's important as a community to always step up and help any family in need because you never know when it's going to be you or your family who needs support. You cn't do it all on your own," said Adams, vice president of investments at Sunmark Federal Credit Union.
This is the first major event he's organized himself and while he said it's been a ton of work, community support has pushed it along.
"There's no shortage of people that want to help out," said Adams, who plays in the band Random Axcess with his wife.
Two more events are planned to reach $500,000 by Feb. 15. An Outback Steakhouse luncheon and raffle is planned for Jan. 30 and the "Hope and Love Ball" is Feb. 6.
For information, visit www.hannahshopefund.org.