INDIANAPOLIS (WISH) — Helen’s Pink Sky Foundation is hosting a lemonade stand event to raise awareness and funds for Batten disease research.

The event, inspired by Helen’s upcoming fourth birthday, aims to educate the public about Batten disease, a rare neurological condition affecting children, and to support research efforts.

“We are so thankful to have the opportunity today to have a Helen’s pink lemonade stand in honor of and getting awareness out,” said Stephanie Bourne, a representative of Helen’s Pink Sky Foundation.

Batten disease is a rare neurological disorder that primarily affects children, with an incidence of about one in every 200,000 births. It is characterized by the body’s inability to produce certain proteins necessary for breaking down cellular waste, leading to a buildup of harmful substances. Symptoms of Batten disease in children include delayed speech, clumsiness, seizures, and progressive loss of vision, ultimately leading to blindness, childhood dementia, and a significantly reduced life expectancy, often only into the early teens.

The foundation is selling pink lemonade and bracelets to raise funds, with all proceeds going towards research and awareness initiatives.

“We’re working with a bunch of different researchers, a bunch of different scientists to help,” Bourne explained.

The lemonade stand is strategically located in a busy plaza, and the foundation will be present all weekend, offering not only lemonade but also themed bracelets and stickers to support the cause.

The efforts of Helen’s Pink Sky Foundation highlight the importance of community involvement in supporting rare disease research and improving the quality of life for affected children. “Even though it’s rare, it’s still one person. That one person’s life matters very much,” Bourne emphasized.