Neuro Note #4

For my fourth neuro note, I chose to watch a TED Talk about amyotrophic lateral sclerosis. The speaker in this TED Talk is a woman by the name of Nancy Frates who is actually the mother of a young man named Pete who was diagnosed with ALS when he was only 27 years old which is a very uncommon and unexpected age to be diagnosed with this disease. Nancy Frates is known as the woman who started the very popular "Ice Bucket Challenge" in order to raise money for research for ALS. When looking for a topic to do my neuro note, I saw this TED Talk and was instantly interested to learn her experience and perspective as a parent with a child who has ALS. Nancy in this speech goes on to talk about how Pete was diagnosed with ALS. Pete had suffered a baseball injury to his wrist and after months of waiting for the wrist to heal, they finally found a doctor who gave them an answer as to why his wrist was not healing. After the doctor gave them this surprising diagnosis, Pete had a vision to do something about the situation he was now in. Since at the time, there was not much awareness on ALS, Pete wanted to raise awareness and be an advocate for amyotrophic lateral sclerosis. What I found most beautiful about this is how many friends and family of Pete came together in order to help raise awareness and find funding for research for ALS. His entire family wanted a roll to helping with Pete's mission including his mother. Pete went on to receive an award for advocacy for ALS and his mother found his mission during this time in search for an effective treatment and plan for the future for curing ALS. Nancy discusses how they had good times and bad times. She goes into detail about Pete's current status of him being paralyzed and using a motorized wheelchair, eye gazing technology, and monitoring his breathing constantly due to his diaphragm giving out eventually. The Ice Bucket Challenge was started shortly after this and it had an exponential growth spreading across the state, the nation, and even the world in only a month. There was a tremendous amount of money raised for the ALS foundation because of this and the under funding issue was not nearly has prevalent. Overall, I really enjoyed watching this TED Talk and learning about a mother's experience having a child with ALS. It was rewarding to see how strong a family can be when they come together and work toward a goal. They successfully raised funding for ALS and are now focused on the next goal which is finding a treatment and goal for ALS.



Frates, Nancy. (2014, October). Meet the mom who started the Ice Bucket Challenge [TED Talk]. Retrieved from https://www.ted.com/talks/nancy_frates_why_my_family_started_the_als_ice_bucket_challenge_the_rest_is_history#t-975883