TLDR: http://venturist.info/aaron-winborn-charity.html

So maybe you've heard about my plight, in which I wrestle Lou Gehrig in this losing battle to stay alive. And I use the phrase "staying alive" loosely, as many would shudder at the thought of becoming locked in with ALS, completely paralyzed, unable to move a muscle other than your eyes.

But that's only half the story. Wait for the punchline.

As if the physical challenges of adapting to new and increasingly debilitating disabilities were not enough, my wife and two young daughters are forced to watch helplessly as the man they knew loses the ability to lift a fork or scratch an itch, who just two years ago was able to lift his infant daughter and run with the 7-year-old. The emotional strain on my family is more than any family should have to bear. Not to mention the financial difficulties, which include big purchases such as a wheelchair van and home modifications, and ultimately round the clock nursing care, all of it exacerbated by the fact that we have had to give up my income both because of the illness and to qualify for disability and Medicaid.

Meet me, Aaron Winborn, software developer and author of Drupal Multimedia, champion of the open source software movement.

Years ago, I worked for the lady of death herself, Elisabeth Kübler-Ross, the author of On Death and Dying. Of course, I knew that one day I would need to confront death, but like most people, I assumed it would be when I was old, not in the prime of my life. Not that I'm complaining; I have lived a full life, from living in a Buddhist monastery to living overseas, from marrying the woman of my dreams to having two wonderful daughters, from teaching in a radical school to building websites for progressive organizations, from running a flight simulator for the US Navy to working as a puppeteer.

I accept the fact of my inevitable death. But accepting death does not, I believe, mean simply rolling over and letting that old dog bite you. Regardless of the prevalent mindset in society that says that people die and so should you, get over it, I believe that the reality we experience of people living only to a few decades is about to be turned upside down.

Ray Kurzweil spells out a coming technological singularity, in which accelerating technologies reach a critical mass and we reach a post-human world. He boldly predicts this will happen by the year 2045. I figured that if I could make it to 2035, my late 60s, that I would be able to take advantage of whatever medical advances were available and ride the wave to a radically extended lifespan.

ALS dictates otherwise. 50% of everyone diagnosed will die within 2 to 3 years of the onset of the disease. 80% will be gone in 5 years. And only 10% go on to survive a decade, most of them locked in, paralyzed completely, similar to Stephen Hawking. Sadly, my scores put me on the fast track of the 50%, and I am coming up quickly on 3 years.

Enter Kim Suozzi.

On June 10 of last year, her birthday, which is coincidentally my own, Kim Suozzi asked a question to the Internet, "Today is my 23rd birthday and probably my last. Anything awesome I should try before I die?" The answer that she received and acted on would probably be surprising to many.

On January 17, 2013, Kim Suozzi died, and as per her dying wish, was cryonically preserved.

She was a brave person, and I hope to meet her someday.

So yes, there we have it. The point that I am making with all this rambling. I hope to freeze my body after I die, in the hope of future medical technologies advancing to the point where they will be able to revive me.

The good news is that in the scheme of things, it is not too terribly expensive to have yourself cryonically preserved. You should look at it yourself; most people will fund it with a $35K-200K life insurance policy.

The bad news for me is that a life insurance policy is out of the question for me; a terminal illness precludes that as an option. Likewise, due to the financial hardships in store for us, self-funding is also out of the question.

When I learned about Kim Suozzi's plight, I reached out to the organization that set up the charity that ultimately funded her cryopreservation. The Society for Venturism, a non-profit that has raised funds for the eventual cryopreservation of terminally ill patients, agreed to take on my case.

Many of you reading this post have already helped out in so many ways. From volunteering your time and effort to our family, to donating money towards my Special Needs Trust to help provide a cushion for the difficult times ahead.

I am so grateful for all of this. It means so much to me and my family to know that there is such a large and generous community supporting us. I hate to ask for anything more, especially for something that may seem like an extravagance.

But is it really an extravagance?

If I were to ask for $100,000 for an experimental stem cell treatment, I doubt that we would even be having this conversation. No one in their right mind would even consider a potentially life-saving procedure to be an extravagance.

And what is cryonics, but a potentially life-saving procedure?

People choose from among many options for their bodies after death. Some choose to be buried, some choose cremation. Some choose to donate their bodies to science. That last is precisely what happens with cryonics: in addition to helping to answer the obvious question of will future revival from cold storage be possible, many developments in cryonics help modern medicine with the development of better preservation for organ transplantation and blood volume expanders.

Yes, I admit that the chances of it working are slim, but have you looked at the state of stem cell research for ALS lately? Consider that the only FDA approved medication to treat ALS, Rilutek, will on average add 3 months to one's lifespan, and you might begin to see my desperation.

But you should be happy with the life you've had. Why do you want to live forever?

The only reasonable response to that is to ask why do you want to die?

I love life. Every morning, even now with my body half paralyzed, I awaken with a new sense of purpose, excited to take on the day. There is so much I have yet to do. There are books to write, games to create, songs to sing. If I can get the use of my arms and hands again, there are gardens to plant, houses to build, space ships to fly. And oh, the people to love.

So please help me to realize this, my dying wish.

http://venturist.info/aaron-winborn-charity.html

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen."

- Elisabeth Kübler-Ross

So get this. The FDA just announced a list of 20 diseases that they will focus on over the next 5 years. And guess what disease did not make it on the list, which includes such notables as narcolepsy, diabetic foot infections, and female sexual dysfunction? Not that I have anything against people who suffer from these other diseases, which also include HIV, lung cancer, and hepatitis C. It’s just that, come on, get serious. ALS should be at the top of the list, rather than invisible, mysteriously forgotten by the suits at the FDA, who are listening to paid lobbyists, and not the patients.

So read my response to them below. They are collecting comments from the public before they make their final decision. If you are so inclined, you have until November 1 to comment.

I am the father of 2 young children, and last year, I was diagnosed with ALS. This disease has already wreaked havoc in our lives, as it has left me without use of my arms or hands, and with a severely compromised breathing capacity. The best is yet to come, however: I will become increasingly dependent on my foot-control power wheelchair for mobility as the atrophy in my legs and feet continue; as my swallowing and speech continue to decline, I will need to be fed through the feeding tube that has already been implanted, and I will only be able to communicate with the eye gaze tracker hooked up to my computer; and I will soon need to decide whether to die or to accept a locked-in state with invasive artificial ventilation.

I was disappointed to learn that ALS was not on the list of 20 diseases being considered for the FDA's Patient-Focused Drug initiative. I can only assume that, considering a new patient is diagnosed every 90 min., while another dies every 90 min., this is an unfortunate oversight that will surely be corrected.

This disease is among the most universally feared outcomes that a person could be diagnosed with. That we have come 140 years since its discovery without a cure, any reasonable treatment, or even a hint of its cause, is a travesty. Please, for the sake of the 30,000 Americans who currently live with this horrible disease, their caregivers and families, and the 5600 unfortunate souls who will be diagnosed every year, reconsider your position, and help fight ALS.

Thank you,
Aaron Winborn

The following transcript is for the video at http://www.youtube.com/watch?v=XfPKKisE88w :

Hello, my name is Aaron Winborn. I am a developer for Advomatic, the author of Drupal Multimedia, and a contributor and a co-maintainer of several Drupal modules, including the Media suite of modules.

Today, I will demonstrate a new feature of the Media: YouTube module: browsing and searching videos directly from YouTube, in the media browser itself. So first, let’s set up our environment.

We are assuming that you already know how to install Drupal. If not, you can find information at Drupal.org.

So right now we are at the modules administration page. We are interested in the modules under the Media package. You will need to install and enable the File Entity module (version 7.x-2.x), and the same version of the Media module.

We will not enable the included Media Field module; it is there for legacy purposes, and has been deprecated in favor of core’s File Field.

The Media Internet Sources module, included with the Media module, is a dependency of the Media: YouTube module, so we will enable that.

Next will be the Media: YouTube module, also version 7.x-2.x.

Finally, we will install the WYSIWYG module.

Let’s start by configuring WYSIWYG. We do that by going to Configuration > Content Authoring > WYSIWYG profiles. Note that I have also installed and enabled the Admin Menu module and the Admin Menu Toolbar module, which gives us the fancy drop-down menus for administration that you see here.

Now in order to use WYSIWYG, you need to have also installed a third-party WYSIWYG library, such as CKEditor or TinyMCE. You need to follow the instructions with the WYSIWYG module to install that, although it is quite simple actually. You just download and unpack the file into the sites/all/libraries folder. You can see that I am using CKEditor here.

The WYSIWYG module allows us to set up profiles for the various text formats on our site; in this demo, we will edit the Filtered HTML format.

Open up the buttons and plug-ins field set next. Then check the Media Browser check box. That will add the media browser button to our WYSIWYG editor, which we will see soon.

In order to use that however, we need to configure the filter in question. In fact, I believe that if we do not do this step 1st, we will get an error message, complete with a link to the format configuration page.

On this page, we need to check the box next to “Convert Media tags to markup”. That is the answer to the number 1 support question that we get in the Media queue, which is, “Why is there bracketed goobly gook instead of my images?”

So now, as we will see, everything should be working now. So let’s test it.

Here on the create article page, we see a fancy button on the body text area! Let’s click it.

And there we go.

These are thumbnails being pulled directly from YouTube. How about that?

And there is even a ghetto pager, or at least previous/next links.

And you can also search YouTube directly from our browser.

So now we will select a video and submit it. Add a title and save the node. And there we go.

And that’s it really. Well, almost.

There are some more settings, specifically here to control which tabs show up for WYSIWYG. Note that at the time of this demonstration, you will not have this functionality unless you install the patch over at node 1434118.

To complete the demo, we will also do the same for fields. Let’s add a field to hold YouTube videos. We will call it Media, and it will be a file field with a Media file selector widget.

Here, let’s reorder it as well for the demo.

We leave everything at their default settings.

Hold on, I forgot that we need to allow the YouTube URI scheme. And the video file type.

So now we will create a new article, and select the media.

And here we have all the tabs available to our browser, including the new and improved YouTube tab.

And also, let us look at another new feature of the media module: My files!

This has been a long-awaited feature for the Media module as well.

Now here comes the 2nd most asked question in the support queue: “How come there is a link to my file, rather than the file itself?”

Let’s just fix that now.

Now we are in the file type administration page, where we can configure the display for each of our file types. Note that we can also add fields to our files, although we are not going to do that in this demo.

We will jump to the video display...

No, we want to make sure that our large formatter is set up properly for YouTube. And it is, so let’s set up that as the formatter for our Media file field.

And there it is, as a generic file, which is simply a link to the file stream itself. We will change that to rendered file. And then we set the view mode to large.

While we are in there, we can do the same for our teasers. We will just set that to the preview view mode, which by default will display a thumbnail.

Whoops, I forgot to save it. Let’s just do that again.

And there is the video.

And there is the thumbnail.

Well done!

I had an appointment this morning with my primary care physician. I thought that the appointment was to request a new lab test. Little did I know that the appointment was really so that my doctor, who shall remain nameless, could wax philosophical on me.

For nearly fifteen minutes, I was subjected to a lecture about how I should look forward to heaven. As if that were not enough, he left me with a list of related reading material. And then he went on to tell me about how I should do something meaningful with my life, such as telling my story to the local paper, so that I can raise awareness of the devastating effects of ALS on one’s life.

I am not defined by this disease.

I am sorry, but I don’t need to be told how to die or how to live. I feel like I have a good handle on both. And it’s not like I don’t want to hear about others’ perspectives on life and the hereafter, it just seems rude to lay it on someone without being asked first.

I used to live with Elisabeth Kubler-Ross, who wrote “On Death and Dying.” Not that he would know that of course, although he may have if he had shut his yap for more than five seconds.

To add injustice to the whole thing, he didn’t even order the lab tests that I had requested. I had wanted a Hair Element Test, to get a count of mercury in my body. He pooh-poohed that, telling me that because different labs report different numbers, that the test is meaningless. He instead ordered a Heavy Element Blood Test, which I have already had. I thought that I was prepared for a little skepticism, but after his lecture, I walked out of that office in a dazed condition.

Needless to say, I am open to recommendations for a new family doctor.

You may know me through my work with the Media suite of modules, and before that for my work with Embedded Media Field and Views Slideshow. You may have read my book, Drupal Multimedia, which I wrote before the birth of my second daughter, or seen me speak at a Drupal Camp or DrupalCon. You might have worked with me at a code sprint. Even if you haven’t met me, you might have seen some of my handiwork through one of the many sites I’ve helped developed over the years with Advomatic. Drupal has been a central part of my life - one of my three loves.

Earlier this year, my family and I were given some devastating news. I was diagnosed with Amyotrophic Lateral Sclerosis (ALS), more commonly known in the US as Lou Gehrig's Disease, which is a motor neuron disease that is slowly killing the motor neurons in my body. This is an incurable, terminal illness: 50% of patients diagnosed are dead within 2-3 years, and a further 20% in five years. Only 10% of patients are still alive after 10 years, and the majority of those are "locked in", like Stephen Hawking, unable to move any part of their body other than their eyes. The senses and cognitive functionality are spared. The disease is a progressively degenerative Motor Neuron Disease (MND), that eventually kills every voluntary muscle in the body, until the diaphragm collapses, which is generally when the patient dies, unless they are given a tracheostomy (and don't succumb to pneumonia).

This rare disease is sporadic, with no known cause. It's considered an "orphan disease", with an incidence rate of about 1 in 100,000. My neurologist is hopeful in my case, as it's limb onset (rather than bulbar, or brain-stem, onset), and I'm on the younger side of the bell-curve. Still, an early prognosis is impossible, as the disease progresses randomly. Right now, he said that based on my EMG, he expects to see clinical signs in my legs by next year, although he can't say if I'll be in a wheelchair by then.

Currently, I am unable to lift more than about 1-2 pounds. It's been hard on my wife, as she's doing everything I'm unable to do (vacuuming, dishes, etc.), on top of raising our children and pursuing her Masters. Our house is the opposite of accessible, with no first floor bathroom and being on a steep hill. Thus, we're in the meantime looking to buy a ranch house that we'll be able to modify.

Although I have some visible atrophy in my shoulders, wrists, and thumbs, I'm feeling on top of the world. I'm trying to front-load my life now, to ensure I'm doing what I'm able to at full capacity while I still can. I'm hopeful; I've been expecting a medical revolution this decade, and if I can hold on with my wits, I might be able to take advantage of that. Even if that doesn’t happen, from reading about and connecting with other PALS (Patients with ALS), I've learned, unsurprisingly, that the longer-lived people are those who manage to maintain a positive attitude in life.

I'm fortunate to be working with Advomatic, both because my job (Drupal!) is something I'm still able (and love) to do, and because I'm surrounded by such a supportive team. I plan to develop for as long as I'm able; I'm looking into voice recognition software for when my hands ultimately go. In a race against time, I'm also 'voice banking', recording my voice so that when I ultimately lose my voice, the computer will sound roughly like me. (Hawking's complaint is that he sounds "like a damn Yankee").

I know that many of you will want to know how to help me and my family. I know from experience that the first response is to want to make food. I appreciate that, as a gift of food directly helps to sustain a person, but we have a large, helpful community through our daughter’s school that is delivering meals once or twice a week. (Although if you’re local to us, we could use some occasional help with the yardwork...)

You can also send donations to the ALS Center at Penn State Milton S. Hershey Medical Center
(see http://pennstatehershey.org/web/neurology/patientcare/specialtyservices/als for more details).

Finally, Advomatic will likely be setting up a fund to help for when I’m unable to work any longer, and to provide a legacy for my family. Please contact Aaron Welch if you are interested in contributing to this.

Thanks,
Aaron Winborn

"It's only when we truly know and understand that we have a limited time on earth - and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had." - Elisabeth Kübler-Ross