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Why I haven’t accepted the ALS ice bucket challenge…

I think at this point we’re all pretty “aware” of ALS, thanks to the Facebook phenomenon of dumping ice water over our heads and nominating our most loved/hated family and friends to do the same. I, for one, have been nominated twice now and I have yet to complete the task. Here are my reasons why:

 

1) I want knowledge, not a fad. When I first heard about this Ice Bucket Challenge awareness project, I was excited about the prospect of people expanding their paradigm and learning about a disease that doesn’t directly affect me. Personally, I know about zero things about ALS. I’ve seen about a hundred ice bucket challenge videos, and do you know how much I’ve learned about ALS? Nada. And I get that that’s not the form of the challenge. It’s not called the ALS Fact Bucket Challenge. I understand that. But why couldn’t it be? I have a good friend who posted a status on Facebook saying basically what I’m saying here. And instead of posting an ice bucket video, she posted 5 facts about ALS in addition to donating money. I love it! 

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What if, before we nominate friends and remind people to donate, we say one fact we learned about ALS in the process. That would be 100 facts about ALS that I would know now after watching all those Facebook videos. Seems like a good idea to me!

 

2) I’m jealous of ALS. I have a sister with a cureless syndrome. I want HER syndrome’s foundation to get millions of dollars in donations. I want people to say “Angelman Syndrome” before they get a cooler of water dropped on their head and a viral video on Youtube. I’m sure there are people all over who feel as I do. There are endless amounts of ailments, cancers, diseases, and even social issues like homelessness that could use more awareness. And there’s where we get to the root of my jealousy. I wish people cared more. I wish people were more interested in understanding others’ life challenges. I wish people weren’t afraid to just ask. I wish people were more transparent with their life challenges so that supporting each other through tough things wasn’t so difficult. I wish struggles weren’t stigmatized. People are way too afraid to be vulnerable and admit they need help. I would really love to be able to steal the Ice Bucket Challenge for my cause of choice. Or maybe I need to come up with something just as catchy to post and turn into an internet phenomenon (you know, just a hobby of mine..). I definitely don’t have a problem with people funding ALS research and learning more about it as a disease. I know that views on ALS info sites have increased massively, so I understand that I’m not 100% correct here. But what I know is that I want to live in a world where people want to help, where empathy is the norm, and where disability, disease, and struggle are not taboo. 

 

So to end this post, I’ll just share a couple short facts about Angelman Syndrome, a neuro-genetic disorder that affects my sister, Carly. 

 

1) Angelman Syndrome is caused by a deletion of the 15th maternal chromosome.

2) Characteristics of the disorder include developmental delay, lack of speech, seizures, and walking and balance disorders (Carly displays other characteristics including these).

3) It is often misdiagnosed as cerebral palsy or autism.

4) It used to be described as “happy puppet syndrome” because of the playful, loving demeanor of people with AS. 

 

If you want to learn more about Angelman Syndrome or donate money to a cure (actually in development in mice!), you can go here.

I’m always happy to talk about it too, so just ask!

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Carly seriously loves to swim and is curious when her sisters try things like snorkeling!

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4 thoughts on “Why I haven’t accepted the ALS ice bucket challenge…”

  1. Yeah, that’s kind of why I added a little twist to my challenge – hope to get people “thinking”. Thank you for your post/info – to God be all glory 😉

  2. Alex,

    This is the best post you’ve written on here, in my opinion. Thanks you for putting to words something I’ve felt from the beginning. Thank you for your sincerity.

    Jens

  3. Good start to your blog! I believe the original ice bucket challenge did indeed say to donate to ALS or to your own cause. What a brilliant accident this has become. Totally agree this would have been better if there had been more awareness attached to it. AS certainly could benefit. If they actually do perfect
    a cure for AS, it will also be the cornerstone for helping so many other syndromes. So for now, it seems we have to educate one person at a time about Angelmans.

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