Na’ama and Nadav Uzan high-five after a successful, refreshing fundraiser. (Photo: David Uzan)
What do you do when life gives you lemonade? Five-year-old Na'ama Uzan sells it to raise money for medical research.
Na'ama's brother Nadav suffers from Angelman syndrome (AS), a rare neurogenetic disorder affecting only one in 15,000. When her parents explained to her that researchers had been able to cure AS in mice but needed more money to find a cure for AS in people, she wanted to help.
The language of laughter
Nadav Uzan was diagnosed with AS when he was two years old. Now six years old, he has limited speech but his father, David Uzan, Senior Finance Business Manager, Toronto Rehab, says he has a keen sense of humour, often getting jokes well before other kids his age.
"We took Nadav to a magic store and the owner started showing him tricks. He loved it. He was in stitches," said David Uzan. "The man at the magic store explained that it's rare for children with developmental delays to understand the concept of magic, but Nadav understood what was special about each trick right away."
The disorder also delays physical and intellectual development, and causes seizures. Most people with AS never speak, and require lifelong care.
A taste for success
Even before her parents sat down with her and had 'the talk,' Na'ama realized her brother was different. Hearing her parents acknowledge it was a relief to her.
"It was always on her mind, what is wrong with him, why does he act the way he does, is he the only one in the world with this?" said Ru Uzan, Na'ama's mother. "We explained it all. She not only gets it, she's the most driven fundraiser in our family."
Na'ama raised more than $100 with her first lemonade stand in June and her family was stunned.
"Her original goal was to raise $1000 over the summer and after many lemonade stands, we're at $8000 now," said David. "At 50 cents a cup, that's a lot of lemonade. Often, people put a donation in Na'ama's collection jar. We've got a bit of a following now — some people literally come to each lemonade stand, similar to how fans of the Grateful Dead used to follow the band around."
The fundraising efforts took off when one of Nadav's friends decided to have a lemonade-stand birthday party to support AS. Home Depot donated enough wood and paint to build three portable stands, and the kids decorated them with hand prints. The kids then jointly ran the three lemonade stands at a local park. After the party, the Foundation for Angelman Syndrome Therapeutics (FAST) got the money and Na'ama got the stands.
Na'ama is not the only one who is now running the lemonade stands for AS research – the idea has spread. Ru says kids aged seven to 11 have been begging their parents to run a stand so they can be the 'shop owners' for the afternoon. Eventually the parents call Ru. She arranges delivery of everything they need: a stand, coolers and pamphlets.
Working towards a cure
"Na'ama had the opportunity to do an interview with the CBC and says she's having the best summer ever, but she hasn't forgotten why she's doing it," said David. "When a customer asks what the money is for, she tells them 'see my brother over there? He has Angelman syndrome and I want him to have a cure.'"
After they contribute, she always thanks them for their support.
Fortunately, that goal may one day be a reality. Researchers have cured AS in mice, and are working to develop a treatment for humans. Because the chromosome defect responsible for AS affects how the brain functions and not how it forms, researchers believe that if they repair the genes, the brain will be able to function normally.
One UHN scientist's work might even help contribute to the cure. Dr. James Eubanks, scientist, Toronto Western Hospital, studies a condition similar to AS, Rett syndrome. "Neurodevelopmental conditions like AS and Rett syndrome share several common features, so research advances in one field can have immediate impact on the other," said Eubanks.
And what does Nadav think of all the excitement?
"When we explain to him that his sister is raising funds to help scientists find a cure for AS, he listens intently, smiles, and usually gives us a kiss," said David. "We bring him to as many lemonade stands as we can so he can greet customers; he loves the idea, but finds it difficult to handle crowds, so he'll say 'all done' when he's had enough."
The UHN Finance team is hosting buffet lunch fundraiser for their department this fall. Their goal is to raise $1,000 for AS.
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