#NECSocialMedia ALSPepperChallenge

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ASL Pepper Challenge

ASL stands for Amyotrophic Lateral Sclerosis. It is a very progressive neurodegenerative disease it begins to affects the nerve cells within a person's brain and their spinal cord. It basically means that your muscles begin to stop working. You have neurons within your tissues/nerves of your muscles, and ASL starts to kill the neurons which means it causes the muscles to weaken. “When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening ("sclerosis") in the region. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their demise. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe. The motor nerves that are affected when you have ALS are the motor neurons that provide voluntary movements and muscle control” (ALS Association, 2018, p. 1). The thought of a disease not having a cure is honestly probably one the scariest things for anyone to possibly go through. One day you are just living your life and the next day you might not be able to use your hand or leg or foot. I hope and pray that these challenges and the money that is being raised for the research of ALS starts to make a difference and can begin to save lives of the people that are affected with this disease.

The Ice Bucket Challenge raised so much money for ALS and brought so much attention and awareness to the debilitating disease. “ALS was once known to be underfunded and lacking awareness, but now many people know about the disease since the hugely successful challenge in 2014. 12,000-15,000 people in the US are diagnosed with the disease and once diagnosed, they usually have only 2-5 years” (Patient Worthy, 2018, p. 1). Meet Patty Haberstroh!

Patty saw the success of the Ice Bucket Challenge and new it was one of the biggest fundraising Social Media events ever and her son and their siblings decided to start this challenge for their mother. Her son Tom had done the Ice Bucket Challenge in 2014 and knew the effect of the disease on people but never thought the disease would affect anyone in his family. “Haberstroh was at a lake house in Tennessee in the summer of 2014 when he was nominated by a friend and had his wife, Allison, take a video of him getting drenched with ice water. He donated $100 and thought that was it. His family, however, is the reason you might have seen celebrities like Jennifer Garner, Shaquille O’Neal, Garth Brooks and Jimmy Kimmel chomping down hot peppers on TV and over social media in the name of ALS research recently.” (Peralta, 2018, p. 1).  Patty is a social worker and a mother of four and grandmother of five and is just facing the devastating diagnosis of ALS herself. Patty was only 68 years old and knew very little about the disease ALS. Patty thought it was the worst disease because you remain lucid and can hear and understand everyone yet your body begins to fail on you. “Patty is known to be a go-getter and advocate for many. She already spends much of her day's fundraising and campaigning to bring about change for those who need it. When the holidays come around, she organizes a gift drive, when the school year starts, she develops a program to get students the supplies they need. Her son, Tom, also made sure to mention that she is the loudest cheerleader at any basketball game. Definitely a great quality” (Patient Worthy, 2018, p. 1).

Instead of bringing cold like the Ice Bucket Challenge during the summer, they decided to do peppers to bring the heat all winter long! Patty’s four children started out in hopes to raise $50,000 for the continuation of research for ALS. They wanted to reach her goal within 90 days of the start of the challenge and then they would take the money that was raised directly to the ALS Therapy Development Institute. “Here’s how the challenge works: You don’t have to be nominated, Haberstroh said, but that’s the way many people end up doing it. You have to tape yourself eating a hot pepper – popular options have been jalapeño, serrano or habanero – nominate three people to participate, then post the video to social media using the hashtag #ALSPepperChallenge within 48 hours. If you’re nominated and don’t eat the pepper, you donate $100 (or whatever you can), but the Haberstroh encourage donating at least a little something to ALS TDI regardless. People can go to the Haberstrohs’ pepper challenge website to donate” (Peralta, 2018, p. 1). As of March 2018, the #ALSPepperChallenge had raised over $538,000 dollars for ALS research at the Institute and have raised their goal to $1 million dollars. The Haberstroh are so grateful for the popularity and donations they have achieved. Twitter and Facebook have been the most popular platforms for their challenge! Haberstroh has over 151,000 followers on Twitter alone. They challenge has reached far beyond the United States! They have people that are participating from Brazil, Singapore, Australi, and England. “It’s not an incurable disease. It’s underfunded,” Tom Haberstroh said in the video, echoing the motto of the Cambridge, Mass.-based ALS Therapy Development Institute, the nonprofit focused on ALS research that the Pepper Challenge will benefit. Rob Goldstein of ALS TDI said the institute is grateful for the Haberstrohs’ efforts, and that the funds will go toward developing ALS treatments” (Peralta, 2018, p. 1).

“For my mom, if we can just stop the progression, that’d be great. She doesn’t need to walk to be happy, she doesn’t need to eat to be happy. She just needs to slow this progression down. For a lot of people with ALS, that’s a huge thing,” Haberstroh said. “It is a devastating disease and it has a sports tie, so we’re hoping that it catches fire” (Peralta, 2018, p. 1).

ALS Association. (2018). What is ALS? Retrieved from http://www.alsa.org/about-als/what-is-als.html

Patient Worthy. (2018). Hot Pepper Challenge For ALS Sweeps Social Media - Patient Worthy. Retrieved from https://patientworthy.com/2018/01/29/this-hot-pepper-challenge-is-taking-over-the-internet/

Peralta, K. (2018, January 25). The latest ALS challenge involves hot peppers, celebrities and a Charlotte writer. Retrieved from https://www.charlotteobserver.com/news/business/article196641349.html