Aaron Winborn: Special Needs Trust

It doesn’t mat­ter what com­mu­nity he is part of, nor who he is. He’s a hacker, a father of two beau­ti­ful girls and a hus­band. He’s being robbed of his life, and his daugh­ters robbed of their father.<p>What matters is we can help. All of us — some of us (me) have been lucky enough to get help and sup­port when we needed it most from peo­ple we didn’t expect it from.<p>We can help him; we can help his fam­ily. Even if only a lit­tle, and even though we know what the future will hold. So let's just do it.<p>Skip the squabbling over politics; national healthcare, etc. It <i>doesn't matter</i> - <i>what matters is him and his family, right now</i>.

I've heard of several cases of programmers getting ALS. This seemed statistically unlikely, since the ALS site stated that only 5 in 100,000 acquired the disease.<p>Then, I googled "programmers ALS" and found this study: <a href="http://aje.oxfordjournals.org/content/162/12/1146.abstract" rel="nofollow">http://aje.oxfordjournals.org/content/162/12/1146.abstract</a><p>It suggests that programmers do have higher risks. (Still, keep in mind that the study is small, and even if there are increased risks, the odds are still low.)

More info on ALS: <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001708/" rel="nofollow">http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001708/</a><p>If I ever get something like this, or anything that eventually "locks-me-in", or something that destroys my mental faculties, I'm going to kill myself before the worst of it happens, around the time when I'm still able to do so. It's the only decent thing to do for yourself and the others around you.<p>Your opinion might be different.

Hackers may be interested in the story of Jaimie Heywood, who when his brother was diagnosed with ALS started his own garage-biotech company to try to find a cure. Sadly the brother died but the effort lives on and Jaimie went on to start PatientsLikeMe.com.<p><a href="http://en.wikipedia.org/wiki/James_Heywood_(chief_executive)" rel="nofollow">http://en.wikipedia.org/wiki/James_Heywood_(chief_executive)</a> <a href="http://westcityfilms.com/smsf.html" rel="nofollow">http://westcityfilms.com/smsf.html</a>

This is really sad news and I will donate to his Trust fund but I can't help but feel strange knowing that I am donating to a fellow programmer. I see posts like these on Facebook and other collaboration sites and I rarely even bother reading the articles.<p>I wish we could take care of all the sick and elderly equally but such is life. Instead of blaming it on the government, the system, society or anyone else, I suggest we donate to the cause to help this man live as well as he can, while he still can.<p>Nobody deserves to be robbed of their life like this.

I posted another sad story about a felow developer earlier today. This guy was going in for a double amputation today.<p><a href="http://twitter.com/iwarshak" rel="nofollow">http://twitter.com/iwarshak</a><p>It's easy to say but I'm going to really try and keep a sense of perspective the next time I'm complaining about something.

When the site is back up, I'll definitely donate as this is a terrible thing to happen to anyone. Not being able to hug your daughter or turn the pages of a book you are reading to her must be torture.<p>It does bring up the discussion of how people with low chances to live need $100,000s of care in the final months of their life. Must be tough to bankrupt yourself and your family that survives you knowing that there is not much you can do to avoid fate. But people myself included would do anything to survive just a few more months.

Sadly before I even opened the article, I knew this was going to be the result of the lack of a proper healthcare system in the US. :(

I met Aaron a couple years ago at a DrupalCamp media module sprint. He's been generous with his time and efforts to help others. I'm sad to see him struggle in his latest video. I hope the best for him and his family.

There's no PayPal in my country (I use Google Checkout and Skrill). If there's an option to donate in a different way I'd do it asap!

Disability insurance seems like something everyone should get if they possibly can -- if you're an entrepreneur and often move jobs, it may be worth having personal coverage vs. relying on employers, since they change and may have inconsistent coverage. Probably the most important coverage after basic health insurance and auto coverage (if you drive).<p>I'm kind of on the fence on long-term care insurance, though (independent of disability). It is dramatically more expensive, basically prepaid nursing care, and depends greatly on your assumptions about the cost of health care and general inflation.

I have two daughters of my own who are roughly the same age as Aaron's and it's crushing to think about how those girls will be affected by losing their Dad. Donated..

text only cache <a href="http://webcache.googleusercontent.com/search?q=cache:BZM_fc59iG8J:aaronwinborn.com/blogs/aaron/special-needs-trust&#38;hl=en&#38;prmd=imvns&#38;strip=1" rel="nofollow">http://webcache.googleusercontent.com/search?q=cache:BZM_fc5...</a>

I want to thank everyone for their ongoing support. I was surprised, pleased and humbled to find my post on Hacker News. I love the Open Source community, and am proud to be part of it.

This remind me of another programmer who got ALS: Hal_Finney

I thought this was going to be an article about "special" needing "trust", which seems like it might be interesting.

<a href="http://www.reuters.com/article/2011/03/16/us-vitamin-e-users-show-lower-als-risk-idUSTRE72F9B320110316" rel="nofollow">http://www.reuters.com/article/2011/03/16/us-vitamin-e-users...</a><p><a href="https://www.youtube.com/watch?v=qMYIJlmeSFM" rel="nofollow">https://www.youtube.com/watch?v=qMYIJlmeSFM</a>

I hope this guy won't have a problem with PayPal should his fundraiser work.

And here we go again with the title changes. Dude, whoever you are, would you please f%^#ng stop? This is <i>not</i> helping. Saying "Drupal Developer" clearly lets anybody reading this site know that the person in question is "one of us." Changing it now means that the only people who will pay attention are the ones who happen to know who Aaron Winborn is.