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Brooke Eby, a , is defending herself after she criticized a recent resurgence of the viral Ice Bucket Challenge. Eby shared a video April 24 explaining why she objects to other causes adopting the , which began in 2014 when people filmed themselves dumping freezing water over their heads in order to raise funds for and create awareness about amyotrophic lateral sclerosis, or . In a selfie video, Eby, who at 33, revealed that she was being "roasted" on Instagram after sharing her view about the challenge's "rebranding.
" Eby’s remarks come just days after she shared featuring an audio sample of a woman saying “I just want to say that my culture is not your costume.” Eby wrote in text on the initial video, “Watching people steal the ALS Ice Bucket Challenge for a different cause when ALS still doesn’t have a cure and is 100% fatal. Come onn.
” In her most recent post, she said she wanted "to really be clear that I'm not trying to debate that X cause is more important than Y," noting it made little sense to argue which health conditions most needed funds and attention. Eby then went on to share the history of the , which she said was kickstarted by the late , the late . (The late helped Quinn and Frates to launch the challenge.
) "It was not an organization," said Eby, adding, "It was two men living with ALS so for it to blow up globally was incredible," she said. "So references to the Ice Bucket Challenge are still driving eyes and fundraising to ALS, which is crucial because we still have zero effective treatments and a two-to-five-year average prognosis," she added. Eby went on to address the use of in the "present day.
" "I love seeing colleges and their students taking on a cause and starting a viral fundraiser," she continued. "These college students are impressive and are probably doing a lot more good than some of us did in college. "But I think to do the exact same style of fundraiser without any mention of ALS, where people like me who are actively dying from this disease with no hope, the concern is that by rebranding the Ice Bucket Challenge (to be) about any other cause will erase the one time that ALS was a household name," she said.
"It was a conversation that everyone was having." Eby said it's up to universities to "educate their students" who adopt the Ice Bucket Challenge to mention that it originated to help those with ALS "because that cause still does not have an effective treatment." "Put a spotlight on the cause that ultimately is allowing them to get the attention that they're getting," she added.
Until then, concluded Eby, she expected to continue to be "wrecked" for her view on social media. "I think my ego could be taken down a couple notches, so this is good for me," she joked. ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, according to the As the disease progresses, motor neurons throughout the body die and the brain loses its ability to initiate and control muscle movement, which causes those affected to lose the ability to speak, eat, move and breathe.
Gina Vivinetto is a trending news reporter for TODAY.com.
