Wednesday, September 3, 2014

Summer of the ALS Ice Bucket Challenge

Dear Em,
It's September, the unofficial end of summer in New England. I will always look back fondly at this summer. We had so many fun adventures with so many people that were near & dear to our hearts. I will also remember this summer as the summer of the ALS Ice Bucket Challenge. At first, when my Facebook news feed was filled with videos of our friends and family dumping ice buckets of water over their heads, I didn't know what to think. According to the videos, they were doing it in the name of ALS awareness. It seemed kind of silly, but after watching tons of videos, I wanted to learn more about the disease.

ALS, or Amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Motor neurons are needed to help your brain communicate with your muscles. When the motor neurons die, the ability of the brain to control muscle movement is lost. Patients in later stages of ALS may become totally paralyzed. I imagine it might feel something like being trapped in your own body. Imagine not being able to use your body to do the things you need to do or even communicate what you need to someone else. Although Lou Gehrig was diagnosed with ALS in 1939, there still is no cure for ALS.

It looks silly to watch all these people dump buckets of water over their heads. I've heard people complain that the ice bucket challenge is wasting clean, drinkable water when there are those who don't have access to it. I've heard people complain that people are wasting their money buying ice & water rather than donating it to a cause. I hear what people are saying, but when you look at the amount of money that has been donated to the ALS Association this summer versus past summers, it's astounding (& at no cost to the foundation for this campaign, even road races & tshirt sales initially cost organizations funding to organize). The ALS Association uses donations to provide care and services for those with ALS, provide funding for research, and empower people to advance public policies.

Even if some choose to dump a bucket of ice water over their heads rather than donate money, this campaign is advancing awareness of ALS. Maybe they prompted more people like me to sit down and do a little research. Plus, since each person nominates others to join the challenge, others in the chain may donate as well.

Still, I thought I had escaped having to do the Ice Bucket Challenge myself. It was pretty far into the summer. The videos in my Facebook news feed had started to slow down a little bit. Then your sweet, little best friend nominated you to do the challenge. You DID NOT want to do it. "It's going to be too cold," you worried. Your uncle Jared suggested we bribe you with cookies or dessert. I shook my head. This was about helping others. I wanted you to help others because you wanted to help others, not because you thought you were going to get something out of it.

I sat down with you and talked to you about people having a disease that made it hard for them to move their bodies & talk. I told you that there wasn't a medicine out there to help them feel better. I explained to you that the Ice Bucket Challenge was about helping those people. You were nervous, but you agreed to do it. So, we dumped a bucket of ice water over your head...but not before you nominated me to do the challenge also.

I was so incredibly proud of you. So, I dumped a bucket of ice water over my head.

Nonnie, Uncle Jared, Aunt Jayme, & even your cousin Michaela dumped buckets of ice water over their heads too.

We donated money as well, because I want there to be better chances of finding cures in the world you live in. I've seen other videos where people completed the Ice Bucket Challenge in support of other organizations, & I think it's amazing how many have been willing to give this summer. Just look at what something as silly and simple as encouraging people to dump buckets of ice water over their heads can accomplish. It just might make the world a better place.

I love you so,

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