Alright... so I have been silent on the ALS Ice Bucket Challenge for far too long. Thank you to some of my favorite people Lizzie Gremminger, Jeremy Lutz, and Henry Zhang for nominating me. Thanks also to Amanda Bankert, Connor Brady, Tyler Rigdon, and Beth Isa Awalt for helping me formulate my thought on the campaign. Most importantly, this post is dedicated to a dear, dear friend whose life has been personally affected by ALS. I decided to get a perspective from someone who this hit really close to home. If you care at all about ALS and the ice bucket challenge, please read below. The campaign raises money, but its short-term money. ALS needs $5.5 million (or whatever the precise figure happens to be) raised daily if theres any hope in developing a cure. There are roughly 30,000 Americans diagnosed with ALS each year, which, statistically, makes it an orphan disease, and worthless in the eyes of pharmaceutical companies that generate larger profit through working on research for those with other neurological diseases, like Alzheimers or Parkinsons, which is unfortunate. If the campaign did anything to address the disease itself and the toll it bears down on the individual affected or the family, it would help. However, it doesnt, and thats the frustrating part. We have this campaign going that generates a mild amount of interest without a deep understanding and thats unfortunate because change happens when were able to see life through someone elses eyes. The campaign doesnt address the realities of ALS. During 2013, my dad spent more time in the hospital than he did out. He was admitted every month for something. ALS really damages the bodys immune system because, you know, the body just shuts down. Im still losing Dad to this disease, but it also took my mom from me. There are too few resources to help people living with ALS. There was a point three Thanksgivings ago now when I was heading back to school and my dad didnt even recognize who I was, a result of the medications he was on at the time. Its frustrating and heartbreaking because when I look at my dad, I still see my dad, and perhaps thats out of my bodys defensive mechanism. I dont see him as a dying man, even though hes brutally skeletal. I know I smile like him, I think like him, and thats comforting, but also very damning, if that makes any sense. Doctors say he doesnt have the genetic form of ALS, and I can get a test to confirm that, but I dont want to because I dont want to know theres a possibility I could develop the disease later on in life -- Id rather live ignorantly in that regard. I knew the disease was real when I saw him choke on water. Water. The thing we need more than anything else to live, and my dad couldnt even swallow water. That was about four years ago now. An ice bucket challenge incorporating an element persons with ALS cant have might be the most insensitive thing about the entire campaign. I am a big fan of social media campaigns and am thankful for the buzz it has created. I merely hope that people are truly learning about the effects of the disease and actually donated instead of merely performing the challenge. Dont let this be a silly phase you go through. If you choose to do the ice bucket challenge, do your research and donate! I have donated on behalf of my dear friend and her family and also to Water for Waslala, a clean water association on behalf of my friend Beth! I challenge Alex Evangelista, Angela Pacheco, Sarah Ritter, Morgan Reynolds, Rachel Marie Simeno, Holly Anne Ebner, Angela Magazino, Jacie Wilcock, Cy Serrano, Mariana La Fianza, and Jim Wheeler to research ALS and donate! #icebucketchallenge #strikeoutALS #youdoyou #thanksforlistening
Posted on: Thu, 21 Aug 2014 01:09:25 +0000
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