— -- When 5-year-old Na’ama Uzan realized her brother, Nadav, was different, she wanted to do something about it. So she set up a lemonade stand to raise funds toward finding a cure for his Angelman Syndrome, a rare neurodevelopmental disorder characterized by global development delays and severe speech impairment.
Fast forward a year and three months, and Na’ama has raised a truly awe-inspiring amount of money: $48,140.
“Once I heard about it, I wanted to help,” she told ABC News. “Because he’s my brother and I love him.”
Na’ama’s mom, Ru Uzan, told ABC News that Na’ama began selling muffins, cookies, hot chocolate, coffee and lemonade last spring, and the Toronto community where they live quickly rallied around the family to help out.
“Within our neighborhood and community, there are one to two stands raising funds for the Foundation for Angelman Syndrome Therapeutics (FAST),” Ru Uzan told ABC News. “It’s people that approach us and want to be involved.”
With their help of her community, Na’ama raised $26,450, all of which went toward finding a cure to the rare disease.
“A lot of people are putting donations in and not taking necessarily what they’re putting in is worth,” Ru Uzan said. “People have just really been supportive. She’s very inspiring, really motivated and very, very compelling. She can talk about it and she’s happy to talk to people about Angelman Syndrome, and it draws them in.”
Draw them in it does, which is what happened when Stephen Murphy heard Na’ama’s story all the way in California. With a son who has Angelman, Murphy was inspired by Na’ama to take action, as well.
“What’s so inspiring is here is this little girl that loves her brother so much that she sets up this lemonade stand day after day, and that act of love and generosity on her part inspired her community to come together,” Murphy’s partner, David Lowe, told ABC News. “The fact that through her lemonade stand she raised $25,000 was just so inspirational, and that’s what really prompted Steve to say, ‘We should follow her example and see what we can do with our community.’”
Murphy and Lowe reached out to their family and friends and, within a week, raised an additional $21,690 that they donated to FAST on behalf of Na’ama.
“Because of Na’ama’s ambition and Steve and David’s generosity, FAST has been able to establish the Na’ama Uzan FAST-TRAC Award (Targeted Research to Advance a Cure),” FAST CEO Paula Evans told ABC News. “Na’ama has worked incredibly hard to help her brother. At FAST, we are committed to making sure every dollar she raises goes towards Angelman-specific research that will help her do exactly that.”
“We’re completely humbled by the response. We’re speechless,” Ru Uzan said. “It’s inspiring to see there’s that much good in people and people are feeling inspired from her story and she’s spreading the word about Angelman Syndrome, because it’s very rare and so important to keep our research going.”
As for Na’ama, she only cares about one thing.
“I’m putting it all to a cure for Angelman,” she said.