ALS Association lauds local 6th grader, educates about disease

The Culver community's remarkable rallying around the Reinhold family in recent months was largely the result of the efforts of Culver Elementary 6th grader Reilly Reinhold's initial fund-raising project for the ALS Association of Indianapolis last fall. Last week, representatives of that organization made the trek from Indianapolis to Culver to surprise Reilly with recognition of, and appreciation for her efforts.

Last fall, Reilly organized a "pajama day" at the school, with students paying for the opportunity to come to school in their sleepwear. Proceeds went to the ALS Association, which battles Amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's Disease. Reilly's father, Culver Comm. High School graduate Rob Reinhold, was diagnosed with the disease the previous year. In response to coverage of Reilly's service project, a fund-raiser for the Reinhold family was organized and in January raised over $30,000 thanks for a groundswell of support, material, emotional, and spiritual.

Cindy Wise, executive director of the ALS Association and Sarah Scantlen, the Association's part-time care services coordinator, visited Culver Elementary School Feb. 16, where they surprised Reilly along with her parents, Rob and Rhonda Reinhold, grandmother Paulette Meeker, and teacher Missy Trent, who first notified Wise of Reilly's project. The entire 6th grade gathered in the school's media center "pit" for the presentation.

"I was impressed with this young girl who was in the middle of her journey with ALS, a disease that will eventually take her father away from her," says Wise. "And she is determined to do something about it. She wants to raise funds and awareness which is what she did. It is going to take awareness and educating people to the disease to raise the funds needed to eradicate this disease. It is a horrible disease with no known cure. It was important for me to let Reilly and all her classmates know that everyone can do something and that something will one day lead to a cure."

Wise says Scantlen had been working with the Reinhold family to help them navigate the Association's programs and services.

"She had never had an opportunity to actually meet them," explains Wise, "so she was anxious to help share important information to the students and have the face to face time with Reilly’s family."
Trent worked to keep the event secret from Reilly.

"I thought they were just there to educate us about ALS," Reilly says. "I was just so surprised that they would come thank me in person. I thought I might get a thank you card in the mail. I never thought these two ladies would take time out of their day to come thank me."

After recognizing Reilly and giving her two t-shirts, Wise and Scatlen
talked to the students about ALS. Seeing Rob Reinhold at the back of the room in his wheelchair was particularly impactful for the students, says Trent.

"I knew her dad was in a wheelchair," student Dylan Lewandowski told Trent later, "but I never knew how bad (ALS) really was."

The biggest surprise about ALS, said student Raymie Shoop, was "realizing (Reilly's) dad can hear you but can't communicate with you. It must be very difficult to feel that way."

During audience question and answer time, Scantlen said the ability to see and hear goings-on around one, but not be able to communicate easily, is one of the most frustrating aspects of ALS.

"It's hard for us to get donations to find a cure because people don't tend to think about ALS," added Scantlen. "Unlike cancer, people might (say), 'Oh, you're collecting for cancer? Here is some money.' So getting donations for ALS is very important. We can't find a cure without money."

Wise and Scantlen also discussed ALS fund-raising walks, encouraging Reilly to consider launching such an event in Culver.
Reilly says her parents were pleased by the presentation and ALS education.

"My dad was glad it happened," she adds.

Thanks to Missy Trent for assistance with this article.