PRINCETON — Costumed children dancing down the sidewalk turned a lemonade stand into a lively fundraiser last week in Princeton.
Family and friends of Nolan Shofner, 8, of Princeton hosted the week-long fundraiser to raise money for research into Spinal Muscular Atrophy (SMA), a disease Nolan was diagnosed with when he was just 4 months old.
Nolan and his older brother, Blake, and a group of about 10 friends and family members helped to greet visitors at the lemonade stand each day, set up in front of his house on Elm Place. To attract the attention of passersby, the young people wore a variety of costumes, skateboarded down the sidewalk, put on impromptu dances, and waved people over to the stand.
Monica Shofner, mother to Nolan, said friends and family also contributed baked goods and drinks to the fundraiser each day, which resulted in more than $400 being raised for SMA research.
Monica said she is so thankful for the support shown by the community for Nolan and the SMA research. There has been great progress in SMA research, but more research is needed, she said. Nolan and the family have met two of the main researchers in the SMA field.
In informational cards distributed at the lemonade stand, Nolan described himself as a happy, bright, fun-loving boy, who happens to be connected to several medical machines including a Cough Assist, IPV vest, feeding pump, pulse/oximeter, Bipap, and a suction machine.
“SMA has left me unable to move, smile, eat and cough, but it has not taken away my spirit and will to live,” Nolan wrote.
Nolan will be a third-grader this fall in the Princeton Elementary School District. He enjoys sports, camping, fishing, the Jonas Brothers, the Imagination Mover and fighting with his brother, Nolan said.
Monica echoed her son’s positive and uplifting attitude.
“Nolan is doing amazing well,” Monica said. “This has been an amazing experience for us. It’s been an emotional week for us all.”
For Monica and her husband, Jason, the week-long lemonade stand was not only a way to raise money for research but also a way to promote general awareness of the disease, which is the No. 1 genetic killer of children under the age of 2 years. Every seven hours, a children is born with SMA, plus one out of 40 people are a carrier of the recessive gene, Monica said.
While SMA is primarily diagnosed in children, it can affect people of any age. The brain and intelligence of the person is not affected at all.
The Families of Spinal Muscular Atrophy has designed August as National SMA Awareness Month.
To learn more about Nolan and SMA, people can visit his website at www.caringbridge.org/visit/nolanshofner.
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