Tag Archives: fundraiser

Why We Need More Ice Bucket Challenges

During the final weeks of August, I couldn’t sign onto Facebook for more than five seconds before stumbling across yet another ALS Ice Bucket Challenge video. These videos featured people, both ordinary and famous, dumping buckets filled with ice on their heads and nominating three new people to participate in the name of raising awareness for Amyotrophic Lateral Sclerosis, a neurodegenerative disease that affects the motor neurons. If a person was challenged, they had 24 hours to post a video or they had to donate $100 to the ALS Association.

I was getting cranky. The environmentalist half of me cringed with each new video that popped up. I considered all of the the people who don’t have access to clean water. I thought about the awful drought in California and how despite lacking water, people were continuing to waste so many gallons for the sake of 20 seconds of Facebook fame. Like many of the other trends that I ignore on social media, I ignored this one too and hoped that no one would ever challenge me.

Then I was nominated. The thing I had spent so much time passively ignoring was now staring me in the face. Do I just pretend I didn’t get any notifications? Do I just write a post saying I was donating and that’s that? Or, do I try to see the good behind it all?

I had to start looking at the facts. Donations had hit 8.2 million dollars by that point. Even if people were only participating to be a part of the crowd, they were learning what ALS was in the process. I knew what the disease was because of stories my grandmother told me about her older sister, who died from it. But according to the ALS Association website, only 30,000 people in America have it. $8.2 million raised to help find a cure for 30,000 people. You have to admit, it’s an impressive and admirable feat.

That’s when everything clicked. I was looking at this challenge from the wrong angle. When I removed my social media bitterness from the equation, I realized what a powerful tool the ALS challenge was. Couldn’t this same concept be applied to other causes? Causes like RA awareness?

All of us with RA complain when someone compares our condition to their grandma’s arthritis. We’re often accused of “faking” illness. And we’ve all had that moment when we wish more than anything that an unsympathetic healthy person could switch bodies with us for just ten minutes.

No, I’m not advocating that we dump water on ourselves. What I am saying, however, is that sometimes advocacy goes far beyond newsletters and 5k runs. We live in a time where technology rules our lives, and the Internet is far more powerful than we think. If the Internet can give us RA forums and blogs full of hope and support, then couldn’t it also help us find a cure?

I’ve seen some people with RA try to create their own ALS-esque Facebook challenges, but they don’t seem to be catching on. I hope one does someday, but that will require large numbers of participants.

Anyway, I manipulated the ALS challenge so I could participate. Rather than dump fresh ice water on my head, I decided to jump into 55 degree pool water at midnight. Believe me, it wasn’t pleasant.

It would be wonderful if RA awareness could become a mainstream topic. Let’s work on that.


Arthritis Walk

Sorry, I’ve been without a computer for a week thanks to some soy sauce damage (it decided to die a week after the incident). You would think that since I live with a software engineer and our bedroom looks like a server room that I would have access to a computer, right? No, not really. Truth be told, only one of four desktop computers is functional at the moment, and that’s the one he uses. Last night I managed to steal a power cord from my mother’s house and got my old Dell up and running, so here we are. Thankfully, I’m picking up my new Macbook Pro tonight. I’m so excited that I can get back to writing my novels again (I don’t have a PC version of my writing software).

Anyway, this past Sunday was the Arthritis Walk in Teaneck, NJ, and I wanted to talk about it. If you have RA or any other type of arthritis, I totally encourage you to participate. While I was expecting it to be a long walk, it was only ten minutes, which was kind of a bummer. That’s the only thing I would change-make the walk longer. Maybe it was just this specific event that was like this; I don’t know for certain. Anyway, besides the point. Yes, I had to get up at 6:30 in the morning to get there. Yes, I had to hear my boyfriend complain about how early it was and listen to him mumble about how I managed to talk him into going. And yea, I was in pain and feeling really stiff. But it was worth it emotionally.

For starters, the volunteers there treat all of the participants with arthritis like superheros. They even had special gifts for us. Lots of different vendors and sponsors had booths with information on new products that could help us feel better. During the opening ceremony, the honorees for this year’s event were invited up to speak about their experiences with the disease. All of them had RA. I found myself tearing up when a 14 year old boy started talking about how awful he felt when he was first diagnosed with JRA (Juvenile Rheumatoid Arthritis) but how he is now able to feel normal because of his medication. I was inspired by the fact that a 4 year-old who was diagnosed with JRA at 18 months can now run around happily like any other little girl, and how she thinks that having JRA makes her special. If these kids can live normally and accept their disease, then so could I. I gushed to Avi all day about how excited I was to be around others like me. I’m sure he secretly wanted to tape my mouth shut, but he didn’t say anything about it.

I didn’t collect as much money as I would have liked, but in general the participants raised over $50,000 for Arthritis research and programs to help patients. But, it’s really not just about the money. I don’t deny that it’s important, but on an individual level, it’s not the most important. The realization that you are not alone in the world is. I needed to hear from complete strangers that things would get better for me. I formed a bond with them without knowing a single thing about them. That moral support is more precious to me than anything else about the walk. I will definitely be participating next year. Seriously, you should too. You owe it to yourself. http://lmt.arthritis.org/

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