In October Action News told the story of then 2 and 1/2-year-old Amelia George, one of just about 100 people living with Ogden Syndrome in the world.
Action News caught up with the George family and Amelia about the progress their patient organization has made a day before National Rare Disease Day on Monday and two days before Amelia's third birthday on Tuesday.
"One of the things we're trying to pursue right now is drug repurposing," said Nikki George, Amelia's mom. "It would be taking a patient's sample and then running it against already FDA-approved drugs and seeing if it makes a difference in symptoms. In order to get started with that specific modality, it would be $150,000. So that's our initial target that we're working towards as a patient organization."
The patient organization is now a recognized 501(c)(3) non-profit and recently received a $50,000 operating grant from Chan Zuckerberg.