It has been 10 years since the ALS Ice Bucket Challenge went viral on social media, and one Noblesville resident wants to revive it this year with the help of iBeach31.
iBeach31, an outdoor beach volleyball venue at 750 E. 181st St. in Westfield, will host a volleyball tournament Sept. 7 to raise money for Deb Sarkisian, the mother of Noblesville resident Kailey Kniola. Sarkisian, 65, was diagnosed with amyotrophic lateral sclerosis, or ALS, in 2022.
ALS is a disease where the neurons that generally connect the brain to muscles become defective. People with ALS slowly lose muscle control. For Kniola’s mom, it started in her legs.
“She had a drop foot, and she noticed that her foot was dragging, causing her to fall,” Kniola said. “It took about a year for her to get a diagnosis. That’s part of the problem with ALS. It typically does take a long time to get diagnosed. She got her federal diagnosis in May 2022.”
Sarkisian, who previously walked 10,000 steps a day and was an avid pickleball player, went from being a healthy, retired woman to requiring a wheelchair in less than two years.
“She can’t stand, and she can’t use her legs at all,” Kniola said. “She has one stable arm. That’s how rapid of a decline the disease can be. When you get the diagnosis, the prognosis is that your life expectancy is normally only three to five years. It can start anywhere in the body and then progress. So, with her, it was her feet and legs, then one of her hands and arms, now her other hand and arm.”
With medical costs increasing, Kniola has teamed up with iBeach31 to host a volleyball tournament, where 50 percent of the funds will go to Sarkisian.
“She has had two bigger expenses lately,” Kniola said. “She got a sit-to-stand wheelchair. It’s really nice because it helps her stand and stretch out and not have to be sitting on her butt or reclining all day. So, costs will be associated with that. And then, because she is wheelchair-bound, they had to get a wheelchair-compatible car. So, those two items were a pretty penny. Any proceeds will go directly to those two items and any other medical equipment it can help cover. The rest of the proceeds will go to iBeach for the costs associated with hosting the tournament.”
The volleyball tournament begins at 9:30 a.m. Sept. 7 at iBeach31. It is a quads co-ed tournament, with teams of four that must include at least one female. The cost is $30 per player and $120 per team. Those who register by Aug. 26 will receive a free T-shirt.
“There are two different divisions, intermediate and competitive,” Kniola said. “We will also be hosting raffles with signed jerseys and volleyballs, and some of the folks who were at the Olympics will be signing volleyballs. I’ve also been reaching out to local organizations that are donating items. So, we’ll have a bunch of random items and a raffle where folks can pay for tickets, which will also help raise money for my mom.”
One of the main goals of the fundraiser is to revive the ALS Ice Bucket Challenge, created 10 years ago. According to the ALS Association, the challenge involves pouring a bucket of ice water over a person’s head, either by another person or self-administered, to promote awareness of ALS and encourage donations to research.
“We are going to encourage everyone that comes to the tournament to make the traditional ice bucket video and nominate three other people to do the challenge,” Kniola said. “I assume we’ll post some on the iBeach Instagram, but then we will also encourage all the individuals to post on their own social media. We will have some ice and encourage people to bring ice as well.”
Katie Conner, co-owner of iBeach31, said one of the centerpieces of the business’s vision and mission is to connect the community. One way it does that is by hosting charity events throughout the year.
“I think when we have a very specific cause to raise money for, it is even easier to say let’s all gather together,” Conner said. “For example, we’re trying to raise money for a wheelchair for Kailey’s mom, and we know how debilitating this disease is. Kailey, her husband and their group of friends have been part of our community since we opened seven years ago. To be able to give back to them and their family and make a difference and an impact is really important to us.”
Kniola, who played volleyball growing up and regularly plays at iBeach, looks forward to spreading awareness of ALS through the Ice Bucket Challenge.
“I feel like most people probably remember the Ice Bucket Challenge from when it first happened, and it’s crazy to think that it was 10 years ago,” Kniola said. “I’m planning on taking a minute to remind everyone to appreciate the fact that they can be out there and feel that sand in their toes and the sun on their skin. Unfortunately, with my mom, her ability to play the sport that she loved was taken away. So, I am just looking forward to reminding everyone to appreciate what they have and raise a little bit of money for my mom.”
To sign-up for the event, visit volleyballlife.com/tournament/22915?tab=information&fbclid=IwY2xjawEXezhleHRuA2FlbQIxMAABHSKwH7WIVSujnJLIXWJ7n0LXg1qJl3XxvZkpuEw30wTGMY1wpkWITmCfzg_aem_e5s_FEyq7pkuiq4d_iEWJg.
10 years of the Ice Bucket Challenge
According to the ALS Association, the Ice Bucket Challenge was started in 2014 by ALS patients Anthony Senerchia, Pete Frates and Pat Quinn.
The association’s website states that the men inspired more than 17 million people around the world to dump ice water on their heads and donate to an ALS organization. The initiative raised awareness of the disease worldwide and collected $115 million to support ALS research and care for people living with it.
For more about the challenge and to learn how to participate in the 10-year anniversary, visit als.org/ibc.
