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.
NobbyNobbs is one of the good people. Please do everything you can.
Donated, and happy to do so. I hope that Michael hits his target sooner rather than later.
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.
I don’t think the PayPal page is working. It keeps giving me an error message sayin to “enter an nonzero amount”, even with a number entered.
@Ziggy66: I just donated and it worked fine for me.
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).
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!
That was my first time donating to something I saw on the internet.
We had lunch with Nobby at TAM7. He’s a good bloke. I’m happy to help.
Can do, should do, will do.
@Ziggy66: Worked fine for me, enter an amount and press the “Update Total” button, you will then be able to continue the transaction without receiving that error.
Did it. Take care, NobbyNobbs.
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.
I don’t know the guy but I’ll take the comments here as recommendation enough. Donation made.
I couldn’t donate much, but I suppose every bit helps.
done
Done and done. That’s what I love about this community. If it were any one of you, I’d throw down and I know you’d all do for me as well.
I remember seeing Michael at TAM and chatted with him a bit at the SkepChick party.
I don’t have a lot of funds, but I donated a small amount.
Remember, everyone, every penny counts.
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.
Recommendations from here are enough for me. Will donate on pay-day.
Donated. I hope the funds get raised soon — I don’t know what I would do if I wasn’t able to communicate at all. Hopefully he will be able to again soon enough.
Done.
Life is such a fragile thing. No one should have to face it so bravely.
@ 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.
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:
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).
Another update. Michael is back online, and posting over at the JREF forum:
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.
Yet another update. Michael has got a post on the main JREF SWIFT blog today, here are a few excerpts…