It was 4 o’clock on a cold Monday afternoon in January of 2014, CHS science teacher Craig Sucher was sitting in a faculty meeting when he heard the familiar buzzing of his phone sound. He had just received a text from his mother, but this was no ordinary message, it contained life altering news. Sucher’s mom revealed that she had just been diagnosed with ALS.

In past weeks, videos of ordinary people, celebrities and public figures completing the ALS ice bucket challenge have exploded across social media feeds around the world. However, there has been criticism that participants are losing sight of the meaning behind the challenge.

Sucher’s mother is among 30,000 other people battling this disease. ALS, also known as Lou Gehrigs disease, stands for amyotrophic lateral sclerosis. A neurodegenerative disease, ALS affects the spinal cord and brain. The degeneration and eventual death of the body’s motor neurons leads to an initial loss of voluntary muscle movement.

As the disease progresses, often complete paralysis and even death occur. Similar to cancer, ALS is caused by a mutation of cells. It remains unknown why this mutation occurs, making it impossible to pre-diagnose this disease. The victims are completely unsuspecting, adding to the devastation of being diagnosed with ALS.

Social media has played a major role in spreading news of the ice bucket challenge, and resultingly raising awareness of ALS. Apps such as Facebook, Twitter and Instagram all contributed to the cause as a forum for people to share their ice bucket challenge videos with others.

Senior Andrew Erblich participated in the challenge and believes that social media brought so much attention to ALS because it increased the relevance of the issue, while providing easy access to information. “Because people’s friends were completing the challenge, others felt more obligated to learn about ALS,” Erblich said.

There have been recent developments in the steps towards finding a cure but the question of what is causing the actual death of the body’s motor neurons still remains unanswered.

Being a biology teacher, Sucher has a good understanding of the nervous system, but, due to the mysterious nature and rarity of this disease, he didn’t initially know much more about it than the average person.

He described his feelings upon receiving the news as overwhelming. “It was a flood of everything, you’re talking disbelief and distraught,” Sucher said.

The recent outpouring of donations due to the ice bucket challenge has hit close to home for Sucher and his family.  He believes that raising awareness is necessary to push the importance of more research about the disease and to find a cure.

Resulting from the ice bucket challenge, a total of $115 million dollars has been donated to the ALS association since July.

President and CEO of the association, Barb Newhouse, explains the impact that these donations have made.

“The money raised will definitely benefit research and help us move along many initiatives that we have been holding because of the resources needed,” Newhouse said. “Keep in mind, though, that in terms of drug development, even 100 million dollars is not nearly enough. To take a drug from research to market costs roughly 1 billion dollars. Technology is a part of the research that we will be seeking to fund as we know that advances in assistive technology can make a huge difference in the quality of life of an individual living with ALS.”

According to Sucher, “Orphan diseases” such as ALS only affect a very small amount of the population. Therefore, efforts to combat these diseases are focused on simply raising awareness more than anything.

The ice bucket challenge has been a momentous stride in the movement towards finding a cure for ALS, not only because of the money donated but because it is now a cause that most Americans are aware of.

Newhouse believes that these donations are a sort of call to action for the association.

“My hope is that we put ourselves out of business by finding a cure,” Newhouse said. “This disease is devastating and we need to continue to push forward for more effective treatments until we can find the cause and the cure.”

Despite the devastation and heartbreak that Sucher and his family have endured in past months, he remains not only positive but hopeful. His mother has lost the ability to talk and has difficulty swallowing because the disease is beginning to affect the muscles in her throat, but his family feels fortunate that her arms and legs have not been affected, unlike many ALS patients.

One thing that Sucher has taken away from his mother’s diagnosis is the importance of accepting each other for our differences, and to remain aware of the struggles that others are facing.

ALS is a terrible disease, and in order to find a cure it is important that the support for the cause remains constant, and that Americans are educated about this issue.

Sucher’s story is a reminder that tragedy can be turned into hope with the right mindset and determination to make a difference. “Pay it forward, and when it becomes about you, it’s just a way to help other people,” Sucher said.