ALS Ice Bucket Challenge

NDS Challenges ALS

STORY AND DESIGN BY ANNA SCHROER, LANEY ULOWETZ AND RACHEL ERGOVICH

Crystalline cubes hit the floor free falling out of the raised bucket onto the concrete below, jumping on impact chipping and landing in a final stalemate with the ground. Ice water flushes in, clothes stick drenched in the icy shower, tingling the senses, working to simulate the loss of function patients with amyotrophic lateral sclerosis experience. This is the ALS Ice Bucket Challenge, the viral sensation sweeping the globe in attempts to raise awareness and money for this incurable disease. The challenge that millions have participated in, hoping to find a cure for thousands. (Story Continued on pg. 16) Photo by: Laney Ulowetz

The Senior Class, challenged by Head of School Christina Broderick to take the Ice Bucket Challenge, dumps buckets of ice water on their heads during freshmen and senior field day. The school raised over $1,250 from a civvies day that will be donated to the Kansas City Patient and Community Services Department of ALS. They went on to challenge the Senior Classes at St. Teresa’s Academy and Rockhurst High School. (Photos by Laney Ulowetz)

The Challenge information that they have received $100.9 million in donations between July 29 and Aug. 29, symptoms in May of 2011 when Dean heard something off in his voice over the phone. His (Story continued from pg. 15) compared to the $2.8 million at this same time last brother eventually started falling all the time and so Her foot taps anxiously as she hears the splish, splash, swoosh of ice cold water swaying in the bucket behind her. With clenched fists, her back stiffens, preparing for what she knows is about to come… Eyes closed. Something hits her. It all happens so fast. A splash smacks the concrete. Suddenly her body is numb. She lets out a screech and shivers. year. With a 3,000 percent increase in donations, it’s safe to say that the ALS Ice Bucket Challenge has created a buzz that’s not only got people talking, but also writing checks. Many people among the Sion community have been especially impacted by ALS. Mary Broschart, assistant Director of College Counseling and manager of the Student Activity Fund, describes he went in for what they call the “bulbar onset.” Not formally diagnosed until November of that year, Dean’s brother had ALS and there was nothing they could do about it. Paul was a professor of mathematics for eight years at the University of Saint Mary in Leavenworth, Kansas. He won the Sullivan Award for Teaching Excellence in 2012, but his symptoms

But she has done it. Challenge accepted. how having a friend with the disease is “just the started manifesting themselves quickly. He started

The Amyotrophic Lateral Sclerosis Ice Bucket most emotional, hardest thing.” Broschart’s friend, having trouble walking, dropped the chalk during challenge has swept the nation. Millions of people George Betts, was diagnosed a few years ago and a lecture and fell often. have posted videos on Facebook, Instagram, even though it’s incredibly hard to watch someone At 53 years old, Paul is now 99 percent Twitter and Snapchat, paralyzed. He cannot dumping water on their heads. But why? “Terminal cancer is far more merciful. move a limb. He cannot speak. He cannot even Many people have either participated or ALS is the worst thing I’ve ever seen...the most swallow. He must be fed through a tube seen these videos, and and uses a mechanical don’t really understand the reason behind it. horrible disease of mankind.” ventilator to breathe. The only thing he can “A lot of people think it’s dumb...I did -Lester Dean, CEO Dean Reality move is his eyes. The amount of physical think that for a really destruction caused by long time; but it actually is raising awareness. It’s so you know go through something like ALS, she tries ALS is unimaginable. great in the fact that people who are condemning to make the best of the situation. “Terminal cancer is far more merciful. [ALS] the ice bucket challenge are raising awareness for “It is amazing how positive he has stayed. I is the worst thing I’ve ever seen...the most horrible ALS because they are still talking about it,” junior don’t know how you do that when your whole life disease of mankind,” Dean said. Katie Pendergast said. has been taken away from you,” Broschart said. Dean describes his brother as an angel and the

Former Boston College pitcher Pete Frates was Junior Sarah Bradshaw’s grandfather died of most polite man you’d ever meet. Even through this diagnosed with ALS in 2011 and has been trying to ALS when she was young. Bradshaw remembers hard time, his brother maintains his character and raise awareness ever since. The phenomenon start- how hard it was on her family as she recollects the hasn’t lost his sense of humor. He can’t laugh, but ed when one of Frates’s friends introduced the icey sad memories of her grandfather changing over Dean can see when there’s a smile on his brother’s challenge to raise money for Frates’s cause. People time. ALS not only affects the patient, but also the face. Dean calls his brother “a fighter” because he pass on the challenge through social media and ei- people around them. The awareness the challenge refuses to give up and still thinks he can beat this ther dump ice cold water on their head, or donate is bringing still means a lot to her and her family. disease. $100 to ALS, although many do both. “I think it’s important to bring awareness to Dean has sent in his blood to test genes that

“Be sure to tell your friends to not only dump another incurable disease that people are going may have caused his brother’s disease. He and his ice on their heads, but get involved! Donate to any through and it’s nice to support those people as a brother are very close, born only 11 months apart. ALS charity, hold a fundraiser, wear a T-shirt, write community,” Bradshaw said. Dean describes him as his best friend. to Congress, help out a family in your area with an Lester Dean, Chairman, President and Chief “I’m my brother’s keeper,” Dean said. ALS patient, just Google ALS and I challenge any- Executive Officer of Dean Realty Co., is considered Dean was a little dismissive of the ice bucket one not to help once they know how horrible this an expert on all things ALS. His daughter graduated challenge at first, but came around to it once he incurable disease is. Ice buckets are great, but we from Notre Dame de Sion Grade School and he is saw that it was raising the right kind of awareness need action!” Frates said via Facebook. a friend of Athletic Director Dennis Conaghan. for ALS. The real challenge isn’t dumping water on

In fact, the ALS association released Dean’s younger brother Paul first started showing your head, but actually learning about what ALS is

and how it affects people everyday. Dean says the hardest thing about being close to someone with ALS is watching someone who was once so vibrant, deteriorate so quickly. It’s hard for them to stand by his side and “stare it in the face.”

“Most people think this can never and never will happen to them or anyone they love because it is so rare. However, this year, one to two of your friends or family statistically will fall victim to ALS...It can happen and it will happen. This can happen to you and it can happen to any of us,” Dean said.

Before the challenge went viral, most people did not know what ALS was, so not only are the donations crucial for research, but they are helpful to the common understanding of what ALS is and how it affects thousands of Americans every year.

“I realize it’s only going to be cold for a few seconds, but it’s going to raise awareness and everyone’s going to know for a long time,” junior Abby Hamilton said.

The Disease

It was a normal afternoon. He was in the backyard watering his lawn, then, before he knew it, he came crashing to the ground. He could barely muster enough strength to roll onto his stomach, let alone stand up. Why did he leave his cell phone on the deck? It took him two hours to reach his phone and call for help. He could have been seriously injured or worse. He could be dead. His ALS had gotten the best of him that day, but he wouldn’t let it happen again.

ALS, commonly known as Lou Gehrig’s Disease, is a progressive disease that attacks the motor nerves that occupy the brain and spinal cord, affecting all nerves that control voluntary muscles. That means a loss of strength in the arms and legs, difficulty speaking, swallowing, breathing and eventually paralysis.

There are three different forms of ALS, the first of which affects the swallowing and mouth muscles. The first symptoms of this form of ALS include trouble swallowing and talking. Another

In pursuit of the viral challenge, junior Katie Pendergast and sophomore Katia Hauptmann drench juniors Stephanie Ostrander and Nathalie

Barbeau with ice water to raise awareness for ALS.

(Photo by Nora Malone)

form affects the muscles in the arms and legs, and the early symptoms of this form are weakness of an arm or leg, and muscle twitches in the arms and legs. The third form is genetic and affects only a small percentage of people that have ALS.

The best way to diagnose ALS, according to Dr. Alan Reeves of the University of Kansas Hospital, is to rule out all other potential diseases that have similar symptoms to ALS. A patient has either an MRI or a CT Scan taken of the head, and the images are sent to a neuroradiologist who then studies the images and decides what might be wrong with the patient.

“A person with ALS can be hard to diagnose because the symptoms are subtle,” Reeves said. “Sometimes the symptoms aren’t noticeable, and the images can look completely normal.”

Since ALS is a progressive disease, the lifespan for someone with the disease is very short.

“They usually will live for three to five years,” neurologist Kathy Hedges, mother of junior Anna Sell, said. “I’ve also seen a very fast form of the disease where someone died within a year.”

Finding a cure for ALS is difficult because of how quick the disease progresses. The disease starts at the top of the brain and moves down into the spine, providing a large area to research, but since there’s not a good understanding of how the disease progresses doctors don’t know which area to target. Reeves compared it to building a roadblock to stop the progression of traffic but not knowing where to start building the roadblock.

There is, according to Reeves, one medication called Riluzole that helps slow down the progression of the disease by 10 percent and helps to prolong the life of people affected by ALS.

Reeves said that the Ice Bucket Challenge is the biggest social media wave that he has ever seen. Both he and Hedges agree that it has brought an enormous amount of attention to the ALS community.

“I think it has done more for the disease than when Lou Gehrig got the disease and announced that he had it,” Hedges said. “Every day that I look, it has 10 million more dollars going to the disease and that will bring a lot of research to figure out the cause of the disease and try to help find a cure.”