The Power of Social Media

Letter from the Editor

Tracey A. Hotta, RN, BScN, CPSN, CANS The Power of Social Media

y fi rst experience in hearing about amyotrophic Over the next 14 years, he led the team to six World lateral sclerosis (ALS) was back in 1983. I was Series titles and set the mark for most consecutive games M in my second year of nursing school when I played (available at: http://www.biography.com/people/ heard that ALS had affl icted my favorite nursing instruc- lou-gehrig-9308266#synopsis; retrieved August 20, 2014). tor’s husband. We had met him several times when he In 1938, Gehrig had his fi rst subpar season. His hard- was picking up his wife after work. He was so young charging career seemed to have caught up with him as and healthy; they seemed to have the perfect relationship. his body started to fail. But Gehrig, who was having trou- After the diagnosis, he would still come into the nursing ble with things as simple as tying his shoelaces, feared school but I began to see the progression of the disease. that he might be facing something more than just the Her husband began to fade from a strong, fi t, and con- downslide of a long baseball career. In the spring of 1939, fi dent businessman to a man who needed help to walk, he admitted himself in the Mayo Clinic and after a series eat, and communicate. We supported them by attend- of tests his physician told him that he had ALS. He retired ing the ALS support group that they organized to bring from baseball on May 2, 1939. awareness to the disease. Experiencing the impact this Seeing such a strong athlete being robbed of his body disease had on Peter was diffi cult to watch, but the emo- so quickly shook the sports world. His farewell speech tional roller coaster that their family and friends endured to the baseball fans and the world was on July 4, 1939 at was heart wrenching. This emotional period in my life the Yankee Stadium during a game that was held in his reemerged when the “ALS ice bucket challenge” became honor. “Today I consider myself the luckiest man on the a viral sensation. Because of social media, this disease has face of the earth. I might have been given a bad break, been given the exposure it needed to make millions of but I have an awful lot to live for. Thank you.” Lou Geh- people aware of the ALS. rig passed away during his sleep on June 2, 1941, just 2 The fi rst mention that ALS existed was back in 1939 weeks shy of his 38th birthday. when Lou “Iron Horse” Gehrig, a New York Yankee’s It has been 75 years since Lou Gehrig died of ALS, and baseball player, was diagnosed with ALS. Gehrig signed there still is not a cure for the disease. Hopefully, that is his fi rst contract with the New York Yankees in April about to change. 1923. In 1931, he set an American League record by club- bing 184 Runs batted in, and, in 1932, he became the WHAT IS ALS third player to hit four home runs in a single game. Two years later, he took home baseball’s coveted Triple Crown Amyotrophic lateral sclerosis is a progressive neuro- by leading the league in home runs (49), average (0.363), degenerative disease that affects nerve cells in the brain and Runs batted in (165). and the spinal cord. 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 results in the brains inability to initiate Tracey Hotta, RN, BScN, CPSN, CANS, is the owner and president of TH and control muscle movement. With voluntary muscle ac- Medical Aesthetics. She is the past president of ASPSN and on the Board tion progressively affected, patients in the later stages of of Directors of the Canadian Society of Plastic Surgical Nurses. the disease may become totally paralyzed. The author has not received any funding for this work. Early symptoms of ALS often include increasing muscle The author reports no confl ict of interest. weakness, especially involving the arms and legs, speech, Address correspondence to Tracey Hotta, RN, BScN, CPSN, CANS, 45 Wild Cherry Lane, Thornhill, Ontario L3T-3T3, Canada (e-mail: Tracey@ swallowing, or breathing. Amyotrophic lateral sclerosis hotta.ca). occurs throughout the world with no racial, ethnic, or DOI: 10.1097/PSN.0000000000000068 socioeconomic boundaries.

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No cure has yet been found for ALS. However, the Food challenge, and they both decided that it would be a great and Drug Administration approved the fi rst drug treatment way to get their vision started. Together they launched for the disease in 1995. Riluzole (Rilutek, Sanofi -aventis US the ice bucket challenge campaign on social media, and Bridgewater, New Jersey) is believed to reduce damage to the challenge went viral overnight. As part of the chal- motor neurons by decreasing the release of glutamate. lenge, people all across the country, in every imaginable More money is needed to provide research, and the ice setting, are dumping buckets of icy water on their heads bucket challenge seems to have been the break that this and then challenging two or three friends, on video, to disease and similar diseases needed (available at: http:// do the same within the next 24 hr—or pay $100 to an www.ninds.nih.gov/disorders/amyotrophiclateralsclero- ALS charity. sis/detail_ALS.htm; retrieved August 21, 2014). As of September 15, 2014, the ALS Association has received $113.30 million in donations compared with THE VIRAL SENSATION OF THE ALS ICE $2.2 million during the same time period last year. BUCKET CHALLENGE These donations have come from existing donors and 1.1 million new donors to the association (available In the past, there have been ice bucket challenges at: http://www.alsa.org/news/media/press-releases/ for various charities, but they were typically local events ice-bucket-challenge-082114.html; retrieved September with minimal publicity. The power of social media has 21, 2014). taken that challenge to the next level. The ALS Ice Bucket It is incredible to see how these men turned their fate- Challenge was a vision created by Pete Frates and Patrick ful diagnosis into something positive, dedicating their Quinn. Pete Frates was a division one college baseball time for recognition and research funding for ALS. Mak- athlete at Boston College. He was known for his strength ing the story personal and using the power of social me- and agility on the baseball fi eld. Hitting the fastball was dia have superseded their goals and dreams. The money his speciality and ranked number one in the division for raised may not help the progress of their stage of ALS, 3 years in a row. In the spring of 2012, Pete noticed that but it will certainly help those who are diagnosed in the he could not swing as quickly, and his strength was fal- future. My hat goes off to these two incredible men, their tering. As his batting average went from 0.400 to 0.250, families, and all who took the ice bucket challenge. The he realized that this was more than just his aging body. month of August 2014 was phenomenal, but Pete’s best Pete Frates was diagnosed with ALS in March 2012, at accomplishment was the moment he became a father. On the young age of 27 years. Six hours after the devastating August 31, Pete and his wife Julie welcomed Lucy Fitzger- news, Pete announced to his family that he had an inspir- ald Frates into the world. Their child will be blessed grow ing vision to lead a movement to fi ght ALS and change up knowing what an incredible, strong willed and deter- the world. He knew that he had to think outside the box mined father she has. and make his story relatable and personal. He became We must embrace any method we can to get our words actively involved in the Massachusetts ALS Association. heard. Thinking outside of the box and having a true pas- It is through this ALS Association that Patrick Quinn met sion and vision can take your cause to new heights. Take Pete. Patrick was diagnosed with ALS in 2013 at 31 years advantage of your social media outlets and best of all … of age. He traveled from Yonkers, New York, to receive the cost is minimal or free medical treatment in Boston. While in Boston, he would stop in and visit Pete to receive information and support about the disease. They were discussing what they could Respectfully, do to make a difference for all other affl icted by ALS. Pat- Tracey A. Hotta, RN, BScN, CPSN, CANS rick had seen other people taking part in an ice bucket Editor, PSN

160 www.psnjournalonline.com Volume 34 Number 4 October–December 2014

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