SYRACUSE, N.Y. (NCC News) – In 2014, we threw buckets of ice over our heads. This freezing challenge helped to put ALS on the news. But that wave of momentum slowly subsided. Even then, many just did the challenge without even knowing what it was for.
ALS is a rare neurological disorder, and is extremely fatal. It is a disease that progresses really rapidly in the body. Once diagnosed, the average life span is typically between two to five years, and can result in loss of muscle control, loss of speech and inability to swallow or eat.
“It’s a disease that is unfortunately, very fatal,” Hoffman said. “And it can affect anybody.”
ALS typically receives very little coverage in the news because it is so rare. And due to the ongoing pandemic, ALS organizations have struggled even more to get air time according to the executive director of the ALS Upstate chapter, Elizabeth Krisanda.
“Since things change every day, it’s really difficult actually to try and compete.” Krisanda said.
The pandemic has presented all sorts of unique challenges in terms of events that can be held, or how to spread the word through virtual options. Under normal circumstances, the Upstate chapter hosts a high school baseball tournament at NBT Bank Stadium in Syracuse. This event allows Krisanda to educate young people on ALS through the pipeline. The current COVID situation has forced them to pivot.
“We do a social media campaign throughout the month,” Krisanda said. “ALS facts or here’s how you can support us as well as highlighting local folks who have ALS families.”
While “bringing awareness” is crucial for the cause, Ron Hoffman-executive director and founder of Compassionate Cares ALS-says he gets weary of overusing the word “awareness” and wants to know what exactly that looks like. He says he wants to give people the real deal when it comes to education.
“You want real awareness, come talk to me,” Hoffman said. “Come meet the people I meet, and see the circumstances that people are living in. And I can show you what this does.”
And despite having an entire month dedicated to ALS, Hoffman says it’s like any other month for him. Nothing changes in May for him. He says one of his biggest goals is to continue to change the way in which people come to terms with their diagnoses, and learn to make peace with it.
“The only way we improve our care is to educate ourselves,” Hoffman said. “And ourselves becoming more comfortable, more familiar with the reality of our own mortality.”
There are only 35,000 cases of ALS in the U.S. Because it is rare, and doesn’t get a ton of attention, people like Krisanda and Hoffman want to do what they can to educate people on this disease. They say people must take it upon themselves to spread the word on social media. They hope that people do this, not just in May, but that the momentum continues all year-round.
For more information, go to ALS.org.
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This diagram shows some statistics on ALS.
© 2021 ALS Organization
