Neuro Note 3

ALS

Nancy Frates—October 2014

“Meet the mom who started the Ice Bucket Challenge”

Frates, N. (2014, October 1). Meet the mom who started the Ice Bucket Challenge. Retrieved August 18, 2019, from https://www.ted.com/talks/nancy_frates_why_my_family_started_the_als_ice_bucket_challenge_the_rest_is_history

Nancy talks about how in the Summer of 2011 her 27 year old son, Pete, was playing minor league baseball and got hit in the wrist while batting. His wrist went completely limb and was like this for several weeks. He went from doctor to doctor with no diagnosis but ended up at a neurologist and they clinically diagnosed him with ALS. Her son Pete was extremely passionate and strong after his diagnosis and decided he wanted to change the face of ALS and help find a cure for such an awful disease. They created “Team Frate Train” to help spread the word about ALS.  After a few years, Pete was put on a compassionate drug that was in trial runs; however, the drug came back with no efficacy. Two and a half years after his diagnosis he is completely paralyzed. He has a feeding tube, cannot speak, he uses a motorized wheelchair, he also uses an eye-gaze communication device. At the 75th year anniversary of the ALS disease BleacherReport.com asked Pete to write an article about the disease and his mother said he wrote the entire article using his eye gaze technology. July 27th was the first “ALS Ice Bucket Challenge.” The word spread like wildfire! After the Ice Bucket Challenge began, the media got ahold of Pete’s story and his website. First it was in Boston, second was National media attention, then it was celebrities, and lastly it was global news coverage. Pete’s favorite Ice Bucket Challenge video was Bill Gates, because he knew philanthropists like him would provide necessary funding to help find a cure for the disease. 3 pieces of advice Nancy wanted to give was: 

• Choose every morning to live your day in positivity and proactiveness
• Person in the middle of the challenge has to have mental toughness to put themselves out there
• If you ever find yourself in a situation that is so unacceptable that you cannot live with it any longer, dig as deep down as possible and GO AFTER IT!

I chose this Ted Talk because I participated in the Ice Bucket Challenge in 2014 and did not truly know the impact it was having. I think watching the video really opened my eyes to the progress Pete and his family are having in achieving a cure for ALS. I believe if finances are provided to help try to find a cure that we will find one during our lifetime. I believe it takes people like Pete, who has the disease, to reach out to individuals like Bill Gates, who has the financial means, to help put their strengths together and find a cure.

I learned more of the advocacy side of ALS from watching this video. I also learned that if you truly believe in something and want to get information, answers, or a cure then you have to FIGHT for it. Pete went from begin diagnosed with ALS at 27 years old to spreading news so rapidly that the richest man in the world did an Ice Bucket Challenge to raise money and awareness. If that doesn’t pump someone up to stand up for what their passionate about, then I don’t know what will. I truly have respect and courage from watching this Ted Talk. 

Here is the link to watch Bill Gates’s Ice Bucket Challenge. Enjoy.

https://www.gatesnotes.com/About-Bill-Gates/Bill-Gates-ALS-Ice-Bucket-Challenge