Hope is a strong emotion that can propel us through any challenge that confronts us. A group of people who radiate hope are members of the Amyotrophic lateral sclerosis (ALS) community. ALS is a neurodegenerative disease that, unfortunately, doesn’t have a cure. According to the ALS Association, people who are diagnosed with ALS usually have two to five years to live. Even with that grim circumstance, people with ALS Exude hope and still enjoy life while they have it. The ALS association seeks to support people with ALS and their caregivers. With empathy and enthusiasm, this organization desires to give those with this disease a chance to live and experience the world before the end of their journey.
“ALS is a devastating disease Physically, emotionally, and financially. This needs more awareness because we should care about people’s opportunity to live, love, and engage with a world in ways that are meaningful to them,” said Dean Feener, Chief Information Officer of the ALS Association.
The ALS Association has several projects underway to raise awareness of the disease. The #ShareYourALSStory campaign began on May 1. This initiative highlights people living with ALS and reveals their daily realities. ALS is such a crushing disease because your brain is losing its ability to control your muscles. This extends to involuntary muscles. The damage of ALS can lead to a person losing their ability to breathe, and the last thing they can control is twitching their eye. As technology advances, it becomes a more vital crutch for the ALS community to rely on to operate.
“A breakthrough for ALS is how technology supports people in the ALS community. Apple has a personal voice. It’s where you can record different phrases on your iPhone, and it creates your voice. I think as technology continues to expand and grow. There will be ways for people with ALS to continue engaging in the world around them in meaningful ways,” said Feener.
Feener further explains that much of the association’s support in communities like Atlanta comes through exciting technology solutions. The ALS Association partners with many companies to aid people with the disease. They recently launched a dropship program that allows equipment to be delivered to their homes—the organization partners with the CDC to register ALS members to engage in healthcare research. The association partnered with a British company called Nouveau Air to deliver remote spectrometer devices. This equipment measures lung capacity and how someone breathes. The data from the spectrometer is sent to a pulmonologist or a breathing medical specialist.
A moment of fun that illuminated ALS was the viral Ice Bucket Challenge. In 2014, 17 million people worldwide participated in recording themselves pouring a bucket of ice water over their heads. Launched by Anthony Senerchia, Pete Frates, and Pat Quinn, three young men with ALS, the trend raised 115 million dollars for ALS research and care. The Ice Bucket Challenge was the most significant event that brought awareness to ALS.
“This was probably the first viral fundraising phenomenon. Since the Ice Bucket Challenge, we’ve supported more than 550 projects in the United States and 18 other countries with $154 million. People’s generosity has had a great impact,” said Feener.
Summer 2024 marks the tenth anniversary of the Ice Bucket Challenge. The ALS Association celebrates the noteworthy moment by challenging everyone to fill their buckets and do it again. Using the hashtag #icebucket10, you can watch recent videos of people dumping cold water on their heads for a good cause.
ALS is a life-altering disease that draws a substantial emotional toll on individuals and their family members. The ALS Association continues to advocate, support, and fundraise for people in this community so no more people have to pay for it.
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Clayton Gutzmore
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