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A Skeptic Needs Your Help

In March 2008, I posted about Michael Strieb, a fellow skeptic who posted under the moniker NobbyNobbs, and his diagnosis of Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig’s Disease). Back then, he had just been diagnosed. By the time he arrived at the Skepchick party at TAM 7 in Vegas last year, he was confined to a wheelchair and used a computer to do most of his communicating.

Now he’s no longer able to speak or type. He’s an incredibly intelligent and kind person, and the world is better off when he can communicate. Now you can help him!

For $3,200 he can afford an eye gaze system to communicate with his family and friends. Other skeptics are fundraising to help him out. We can totally hit that, seeing as about 10,000 of you are reading this right now. Send a few dollars their way and feel good about greatly improving the life of a fellow rational human.

Rebecca Watson

Rebecca leads a team of skeptical female activists at Skepchick.org. She travels around the world delivering entertaining talks on science, atheism, feminism, and skepticism. There is currently an asteroid orbiting the sun with her name on it. You can follow her every fascinating move on Twitter or on Google+.

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27 Comments

  1. I’ve lost a friend to ALS and several patients to ALS. Your ability to function physically essentially melts away over time; you are imprisoned by yourself.

    I was at a function with my friend when he was at the beginning of his decline and people kept coming up to ME because I recently recovered from something called bronchiolitis obliterans with obstructing pneumonitis, which even though it causes searing chest pain, is not as bad as it sounds. I was fine. He was not. And I was slightly embarressed that people were wishing me well. So after HE asked me how I was, we briefly talked as both friends and medical colleagues.

    I said that after suffering a severe but self limiting disease I realized that patients whether they ask out loud or not, when very ill, want to know will they be as they were before they got ill; 100% as before. To paraphrase from the old joke, they want to know if they can play the piano again. We need to , at least, address this question as we treat our patients even if we can’t guarantee an answer.

    Then I asked him, “with your disease, a disease you know you will NEVER recover from, what question runs through your mind?” He paused and thought seriously and said, ” I no longer have questions. I simply want to live each day the best I can.”

    If we can help Michael Strieb live each day the best he can, then I’m in.

  2. You have to update the total after putting in the amount. Then fill out all the cc and address information. That’s what got me the first time too.

    Seeing as the device is $3200 really should compel everyone to donate something, just $5 or $10 … that’s totally achievable (and extra money can pay for bills and whatnot).

  3. Donated. And I looked up the “Eye Gaze System”, and it is truly amazing. Typing with a glance. ALS and other debilitating diseases suck, to be sure, but at no other time in history have people with these conditions had the opportunity to use technology to assist them like this.

    Yay science!

  4. Happy to help, just sent my donation.

    It seems the Total Counter is not working yet (or is this something that needs manual updating from the site owners?)

    I hope we get the money together soon.

  5. I am a good friend and neighbor of Michael’s. We worked together for several years, science teachers in a private school for students with learning differences. I remember Michael at TAM last summer with his walker and balloons. He was invited to sit with Randi at the evening magic show. That and other kindnesses meant a lot to him. Michael is a great person with a wonderful young family. His wife Christine, son and two daughters are amazingly strong and the family can certainly use our help. Please give whatever you can. It has been devistating to watch Michael’s Rapid decline and uplifting to see his inner strength.

  6. @ dadduh

    “Life is such a fragile thing. No one should have to face it so bravely.”

    Very nicely said.

    But if one should need to face it so bravely, then he should never have to face it alone.

    Hopefully, this may minimize that isolation.

  7. Hey, just a quick update – we did it. In only four days, we managed to totally meet the goal and then some. According to Starthinker over at the JREF forum:

    I just wanted to say I cut the check and FedExed it to the Eye Gaze company. Mission accomplished!! Good work everyone!

    There’s some discussion in that thread of continuing the drive to buy Michael a wheelchair-accessible van.

    (Note: those two hyperlinks will only work if you have a login at the JREF Forum).

  8. Another update. Michael is back online, and posting over at the JREF forum:

    Well, I’m back.

    My new system, nicknamed ”Toby” for reasons I’ll explain in a moment, is up and running.I’m adapting to it quite quickly and although slow by normal standards,I find I’ m able to type somewhat faster than I expected to. Eventually I’ll get around to timing myself and report back with a wpm rate.Once I’ve worked out all the features I’ll be able to browse online, email, text, chat, listen to music, create photo albums, download ebooks, play games with my kids, speak aloud, and even control the tv. And the coolest part is I do it all without lifting a finger. Literally.

    One thing completely shocked and overwhelmed me. I’m told that the very fact I was able to get this system is due to the incredible generosity of an online community of friends. I was just stunned, and although I don’t think I could find the words to properly say thank you, I really should try. However, I don’t know if it was you guys, skepchicks, another group, or a combination. So I find I need your help one more time, to answer this question: to whom do I give my undying gratitude?

    You can see the entire post here, but it is in the members-only area so you will need to log in to see it.

  9. Yet another update. Michael has got a post on the main JREF SWIFT blog today, here are a few excerpts…

    I have occasionally seen people lament (or brag, depending which side of the aisle they’re on) that one of the advantages a faith-based organization has over other types is its ability to raise funds for charities with relative ease. There is no doubt that these groups, from the local soup kitchen to the Salvation Army, do a tremendous amount of good. But that doesn’t mean you can count out an outfit like the good ol’ JREF. So gather around children, because I have a story to tell…

    Lest you think this is a sob story, let me assure you it is not. It is one of hope and goodwill, of kindness and friendship. The time was coming soon when I would no longer have enough movement in my hands to even use my cell phone, but there was an option. I learned through our local chapter of the ALS Association (a wonderful organization; check it out at http://www.alsphiladelphia.org) of an eye gaze system where cameras track the movement of your eyes and direct the cursor accordingly on an on-screen keyboard. The only problem was that even with insurance, the cost was prohibitive. It would take close to a year to save it up.

    Enter the skeptic community….

    At least two discussion threads were started. Skepchick.org picked up on it and I’m told it got a mention in Bad Science. Soon the site had a few hundred hits, then a couple thousand. And in just four days, the cost of the system had been covered. Two weeks later it arrived, and for the first time in nearly a year I could use a voice to speak to my wife, my children, and my friends.

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