Wake Up Winborn

I just got an amazing email from AaronElBorg, a fellow Drupaler, father, and proponent of cryonics, who is also in the Seattle-based band, Glose.

AaronElBorg has placed a geas on me to remember that there is to be a song written in my honor called Wake Up Winborn, and in the ultimate treasure hunt, to look for it after my passing.

Now how cool is that? What an honor, to have a warrior's anthem written after your passing? With the challenge to find it afterwards?

Some may call it a fool's errand, and perhaps I am the fool, but I prefer the Tarot's version of the Fool, with one foot perched precariously off a ledge, ready for a journey of epic proportions, a dog nipping at his heels.

In any case, you'll most likely get to hear it before me. Eventually, I hope to be able to sit down with AaronElBorg and have a beer while we listen to the song, but a lot will need to happen before then. First, we'll need to sufficiently conquer or at least stave off physical death. For me to be able to take advantage of that will also require that we have found a way to reverse death, to the extent that we can repair any damage from the freezing process involved in my planned cryonic preservation. And we'll also need to have kicked the crap out of ALS. Alternatively, found a way to upload our consciousness to a computer or robot or some other containing form.

Tall order to say the least. But even before I can have the chance of partaking of this hypothetical revolution of medicine, we must raise the funds to freeze my body. That's where you come in. A journey of a thousand miles begins with a single step. And even though I can barely take a single step, I am doing my best to walk that long journey, but I need your help.

Please help-- your donation will be doubled with the matching grant posted by Longecity of a thousand dollars.

Thanks, and Rock On!

The Eight-Hundred Year Old Man

I was hanging out with my good friend Kevin Strawser the other night, and we got to talking about the recent news of the scientists at the University of Southern California who claim to have identified a way to allow humans to live for eight-hundred years or more. I'll just pause a moment to let you consider the vast implications of that finding, and we'll get back to that in a moment.

Wait, though. What do you mean, eight-hundred years? How do they intend to do that? What does that even mean, I have no frame of reference. Over my cold, dead body. And can I have fries with that?

These are some of the questions I hear rattling around out there, and I'll try to answer them in turn. The first question, the how, is a bit tricky to understand, and boils down to an arcane bit of genetic tomfoolery with some yeast. And before you shrug the whole thing off scoffing at that, just remember that there's not much difference between you and yeast at the DNA level.

It turns out that there are two genes hidden in the yeast that are common to all animals, and that includes you and me, folks, that are the lynchpin to the whole shebang: the first controls aging and the second bestows a susceptibility to cancer. It appears that with yeast that if you knock out those two genes, you increase their lifespan ten-fold. The really exciting thing is that in theory, we should see similar results after punching out the genes from fruit flies, mice, baboons, or any other laboratory animal, such as humans.

This is really exciting stuff, folks!

Okay, so what does this all mean? If you can live for eight-hundred years, what will that do to the job market?

That's an excellent question. Thanks for asking. I mentioned this whole thing to the aide who comes in the mornings to feed me, and her response was, "I hope they give me more hours in eight-hundred years." And that is a powerful reason that I can see being an argument against longevity at these scales. It's hard enough to live in abject poverty doing menial labor for eighty years, but when confronted with the prospect of increasing that tenfold, I think we'll see a rash of suicides, or at least a refusal to take the blue pill, which will arguably be the same thing in the end.

She also said that she was pretty certain that the technology would only be available to the rich and famous. I easily refuted that notion. Yes, perhaps initially after whatever hoops the drug manufacturer will have to jump through to get FDA approval, and any concerns of animal cruelty (I mean, as bad as you might think flipping burgers for eight-hundred years might be, imagine that long as a laboratory rat) they might get away with charging a hundred thousand a pop. But I guarantee you that once they wise up and realize the vast scale of economy at play here, as in a market demographic of in the neighborhood of oh, freaking everyone, you will be able to get your injection of gene therapy at your local CVS for $2.99.

Assuming China doesn't pounce on the opportunity first, and I'm rooting for some healthy competition in this arena, I suspect that we'll see this thing hit the grocery stores in about twelve years. And I expect that it will sneak up on you like your nine-year-old daughter's Dick Tracy iPod that's capable of video conferencing, texting, and phone calls, all without a plan. And even if you opt out, you'll have to do so knowing that she is opting in.

Alas, as excited as I am for this upcoming and inevitable potion of immortality, I am sitting here writing about it all with my eyes, trapped in this body with the life expectancy of a laboratory fruit fly. I used to think that I was born at just the right time in history to witness the end of senescence, but history is yet to have the last laugh. Even if this magic amulet of longevity were available tomorrow, it would be entirely useless to a patient of that harsh mistress, ALS, which accepts no quarter and offers no mercy.

Which brings me, finally, to the silver lining to all this. The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.

Hang on to your Bitcoins, we're in for a long and bumpy ride. And did I mention long?

Letter to a Patient Recently Diagnosed with ALS

Hello,

Welcome to the stupid club. So you're at what, a month now? That sucks, my heart goes out to you and your family. I imagine the shock is over now, and you're probably slowly moving towards an acceptance. The first thing I want to say is that your neurologist doesn't know crap. Oh, he or she probably knows a lot about the mechanics of your disease, but what I mean is that they don't know diddly about anything important, from even what caused your neurons to begin to die off. Let alone have the first idea of what to do about it.

Remember that you are in charge of your treatment. And even though there is not much that can be done medically for you, there is some that can be done. Rilutek, yes, since you're bulbar onset. But also, technology holds the only real hope for you.

I used to use Dragon Dictate to control my computer, but now I have switched to an eye gaze tracker exclusively. If I become one of the lucky ten percent to lose control of his eyes, there's brain computer interface, still fledgling but very quickly improving. More importantly, there's the Bipap, which I depend on now to keep my breathing going. And soon, I'll need to have a tracheostomy if I want to go on with this sweet life.

Tiger

But these are easy to learn about, and even though your doctor doesn't know jack, this is something they can actually do. It's the little things, though, that you'll need to learn about. The things that your neurologist will probably skip telling you about, or tell you about as an afterthought. And it's because your neurologist doesn't have ALS.

Like you'll want to get a bidet as soon as possible. This little device offers me the last bit of privacy and shred of decency. Or the sleeping situation, which you will need to adjust to and experiment with constantly. You'll need to discover for yourself if the bed will work for you, or if you'll need to sleep in a recliner, or even your wheelchair. And be forewarned, the most difficult part of this illness, for me at least, is your ability to get a good night's sleep.

I haven't begun to do justice to what you'll need to learn. There's so much more, like make sure that you get your arms stretched daily, and don't forget your wrists and fingers, if you don't want to end up with claws at the end of your arms. And get a Vitamix to make green smoothies, and don't let them tell you that the cans of so-called food they will inevitably shove down your feeding tube are adequate nutrition. That crap is nothing more than corn syrup and multi-vitamins, and fifteen dollars a can, nonetheless.

I am so sorry that you have been diagnosed with ALS. I wish it were in my power to reverse that terrible death sentence. No, it's worse than that. It's a punishment where you get to slowly watch your body dissolve, as you are forced against your will to become a spectator in life, as the people around you can only watch helplessly as the man they know and love becomes trapped in a hollow shell of a body, and they can only wipe your drool and help dress you like a rag doll, knowing that at the end, which is approaching far too quickly, they'll have nothing left to wipe than their own tears.

But it's not all bad, before I drive you to think there's nothing left to live for. To the contrary, as difficult as my life has become, it's nothing compared to my wife's, Gwen. Or should I say Wonder Woman. She not only has to grieve the little losses every day, and try to pick up the pieces as quickly as they fall, she has to take care of our two young children and me, and take care of the bureaucratic tangle of health insurance and Medicaid, and deal with countless phone calls, as I am no longer able to speak on the phone. And she bears the brunt of my restless nights, unable to even nap during her hectic afternoons. And that is all on top of her full time job and night school as she pursues her Masters.

Butterfly

No, there are lots of little joys in life that fill me up. I relish the time I get with my wife and daughters. Even though it is, by virtue of my physical limitations, as a spectator, these little moments are priceless. Although it comes with a corresponding and utter loss of privacy, I enjoy the company of my nurses, volunteers, and other visitors.

And the retirement is not all that bad. Although it's not at all what I imagined, and it's been thrust on me twenty years too soon, and I've had to make hasty adjustments to my bucket list, there are still good things about life. I still wake up excited about the day, and have a growing list, albeit limited, of projects I want to complete. Like books to write and programs to code on the computer, and even drawings to paint with my eyes.

I hope that my life stands testimony to the resilience of the human spirit, which cannot be killed, even when the mind is trapped in a body unable to lift a single finger in protest. And that even in a world that at times seems harsh and uncaring, that that same spirit grows ever stronger, vigilant against the injustices in the world, ever watchful for the joys it can bring to its fellow man, ever hungry for the simple pleasures to be found in life.

I will conclude with the story I learned in my sojourn in a monastery about a decade ago, of a monk who was being chased by bandits wielding swords intent on killing the monk. They chased him right off a cliff, and he caught onto a branch. The monk looked up, and saw the bandits above him, brandishing their swords and shouting curses at him. He looked below at a ledge beneath, on which paced seven hungry tigers, growling as they waited for the inevitable fall of the hapless monk. And then he looked at the branch to which he clung, and he saw a butterfly. "How beautiful," he said to himself.

Stay strong,

Aaron Winborn

Tribute to Rick Potvin's Cryonics Commentary

I was just outed by the sleuths over at Rick Potvin's Cryonics Commentary. Therefore, I have decided to come clean. Here is the original photo, before I shooped it. Enjoy!

family photo op

Persistence of Memory

Before I begin writing this, let me start by saying that I have officially given up wrestling with Dragon over control of my computer. Nuance has made an excellent piece of software, and I have no complaints, as it has served me well over the past year and a half. It's just that my voice has degraded to the extent, thanks, Lou Gehrig, that the computer no longer recognizes what I say with any reasonable accuracy. So how are you typing this, I hear you wondering?

I'm glad you asked. World, meet Dasher, the marvel of the twenty-first century. Dasher is an Open Source piece of software that works in conjunction with my eye gaze tracker to allow words to fly across the screen. I'm up to about twenty words a minute, with improvement every day.

My very first memory in life is when I rode on the back of a sidewalk chalk giraffe. I'm sure you didn't see that coming.

Well, it's true. It happened when I was almost three. March 11, 1970, to be exact.

It was dark, I remember. The giraffe was friendly, of course, though you would have already guessed that much, for what other sort of sidewalk chalk giraffe would allow a toddler on its back?

sidewalk chalk giraffe
(This image was created by myself with my eyes only, in case you're wondering.)

The giraffe had spots all over its neck, messy yellow and pastel purple spots, just like you would expect. Big round circles, drawn roughly, the sort that typically sport the back of a giraffe of that rare species.

I hold the memory dear, and when they make the movie of my life, I hope they get it right and animate this wild boy riding the sidewalk chalk giraffe of his dreams.

Oops, I gave it away, didn't I? About the dream, that is. And without a spoiler alert, even. Sorry about that.

The rest of that memory becomes a little hazy to me. I do remember the shock of light flooding the playhouse, moments before being lifted rudely without my consent and taken outside.

This is the part where I cannot completely trust my memory, because I first of all remember the rest of this in black and white, and correct me if I'm wrong, but I'm pretty sure that color had been invented well before 1970.

Second of all, although I remember my father telling me that there was someone he wanted me to meet, as he carried me out of the playhouse and away from my sidewalk chalk companion, the memory clearly shows my father standing a bit away, opening the door of a strange car, maybe a taxi, and with a red beard and his sailor's uniform, dashing, but, I hear you complain, how could you know his beard was red if the world was black and white? Bear with me, this is the way that ancient memories of childhood persist.

And finally, I remember quite clearly that my father was still holding me as he opened said car door. What, you ask, dear observant and slightly skeptical reader? Are you implying an out of body experience?

I make no such claims. In fact, I make no judgements of value to this memory. I simply accept it as it comes flying across the decades to this man, sitting in his wheelchair and reminiscing on that far away time, when he could still walk, could still grasp tightly to his father, and had fanciful dreams of being a zookeeper or a sidewalk chalk artist.

And now if you'll forgive me, it's time I take a brief rest, for I've just learned that Dasher interprets my tears as an indication to cause the letters to cascade in a mixed up clutter of word salad at the bottom of the screen, and I am unable to wipe my eyes without assistance.

But wait, I hear you cry. You can't leave us hanging. We don't know who your father wanted you to meet? And please, tell us more about that giraffe.

Well, since you ask so nicely, gentle reader. After all, the cliffhanger is but a cheap literary trick whose sole purpose is to sell the sequel, and besides not wanting to be seen as cheap, I'm not interested in causing undue stress. So let me wrap this up, and in a tidy package with a bow, nonetheless.

So it might have occurred already to you, astute and forgiving reader, that the person my father wanted me to meet may have been a new addition to the family, such as a younger sibling or a puppy or a visiting aunt. And right you are, there's no pulling the wool over your eyes.

In fact, the next part of my fuzzy memory is just that, although you have to remember that even though this memory is brought to you by a forty-five year old man, comfortable in his cliches, it comes from a very, very young child, in fact about the age of his youngest daughter, who should be getting home from daycare in a few minutes.

My father, still holding me from my distant vantage point, if you will recall, opened the door to the cab, an old black and white, if my memory serves me, and my mother, strangely skinnier than the day before, stepped out, holding this tiny, tiny baby. And I remember my dad saying, "Aaron, Meet your new baby brother."

Now we all know how memory works, and we know that some memories are better than others, and that some memories shift and turn in our recollections, transmuting into weird shapes as we try to reclaim them from the hallowed shores of youthdom. And some interlopers, fancy doppelgangers come unbidden in the night to place themselves in our minds, are not even ours.

But regardless of the glaring inconsistencies and window dressings enshrouding this treasured memory of mine, two things have stood the test of time, entrenched in the clarity of hundreds of late night meandering recollections. The first, as I have already relayed, is that as impossible as it sounds, I clutched that sidewalk chalk giraffe's neck tight and rode it through some lazy afternoon nap.

And next, and this is probably the reason the memory has even bothered to persist across the decades is this: the thing that stands out most to me is a vague feeling of annoyance that they dragged me away from my adventure with that sidewalk chalk giraffe for this?

And there you have it, dear and gallant reader, the defining oldest memory of mine, this sanctuary that bears me through difficult, long nights, this persistence of memory.

By the Best Definition of Eternity…

We are all eternal

By the best definition
of eternity,
the span of time
between a person's
birth and death,
We are all eternal.

- Aaron Winborn

(Original image from http://en.wikipedia.org/wiki/File:Venus-pacific-levelled.jpg - CC-By-SA)

Password Algorithms: What to Do When You've Been Hacked

Last night, I was sent an email from a friend whose email was hacked. I am seeing a lot of that in the past year or 2, so I thought I would share my response to help train folks into better password habits. And seriously, I think that it would be a good practice to install the Password policy module on all your Drupal sites, to help enforce better habits for everyone. That module can be configured to force passwords similar to what I described here, and much more, such as requiring that passwords be periodically changed.

Image CC-BySA from http://gawdoflolz.deviantart.com/art/My-password-322798011

Dear (Friend),

I got those emails, it does look like it's possible that your email was hacked. You did the right thing, by changing your password. However, we need to do a few other things to try to minimize the damage.

1st, it is entirely possible, in fact probable, that they did not actually hack your computer. Identity theft is rampant, and in this interconnected world, does not even require any access to your computer.

That said, it is still possible that your computer has a virus. That would be the 1st thing to check. If you have an antivirus program, you need to ensure that it has been updated. That may require a fee, if you are using a paid antivirus program subscription.

If you do not have an antivirus program, I would highly suggest Avast, which I have been using for years. You can safely use the free version of it, as it is not crippled in any way from the paid version. You can find it at http://avast.com.

After, and only after you have scanned your computer for viruses, then you can get on with the business of securing your accounts against identity theft.

You will need to change your email password yet again, I am sorry to say. Additionally, you will want to change the security questions, which I believe that Yahoo will ask.

Treat the security questions as passwords in themselves, as these are most commonly used to hack in to an email account. That means that you should not use anything resembling what they actually ask for, such as your mother's maiden name or your 1st dog. That can be discovered with Google these days.

Next, a word about passwords. As you may have heard by now, you need to have a password that cannot be guessed. Unfortunately, that is not enough. You also need to have a mix of cases, at least one number, and a special character, such as a punctuation mark. Additionally, you need to have a different password for every account that you have.

I cannot stress that last paragraph enough. It is too easy for a hacker to get into, say an account with a forum, and use that to get into your Wells Fargo account. For instance, to use myself as an example, about 6 years ago, I accidentally broadcasted my password into a chat room, and about 2 weeks later, I got an email from a woman wondering where her Gucci bag was that she had purchased from my eBay account. It turns out that someone in Russia had hacked into my eBay account and listed about 100 fake Gucci bags.

I know that this sounds daunting, but it is necessary. Fortunately, you can use what is called an algorithm to remember your dozens of new passwords that you'll need to create. You can use that to create a new password for any site, and you will always remember it. Additionally, it will be secure for all intents and purposes.

Basically, you will choose a passphrase, modify and, and apply it to any site. For example, and please do not use this example, let say you choose "apple" as your passphrase. We will modify that to have a punctuation mark and a number, so that it will be "@pp1E". Then you would append that to the 1st 4 characters of whatever site that you are creating an account for. For instance, for eBay, your password would be "ebay@pp1E", and your Hotmail account would be "hotm@pp1E". This will make your passwords immune to so-called dictionary attacks, where they try to figure out your password by entering random words from the dictionary.

Much easier to remember, right? And for your financial accounts, I would suggest creating yet another algorithm, as an extra layer of protection.

You can apply this same idea to those security questions that you see everywhere. Basically, you do not want to actually use a real answer, because it is far too easy for a determined hacker to read about that experience in your 1st car that you posted in Facebook. Instead, treat them with the same respect as your passwords. For instance, you might create an algorithm with your grandmother's cat's name that you apply to a site's question for referring to your own pet.

Once you have done this, you should be fairly safe.

Good luck.

As a postscript, and not to deflect responsibility, it is entirely possible that your email was not the one hacked. It may have been a more intelligent hack, where someone hacked into someone else's Facebook account, for example. From there, they may have grabbed the contacts and spoofed an email from it, sending spam and making it look like it came from yours. This is a more insidious form of identity theft that is becoming more common. Still, the best defense is to secure your passwords.

Open Source Software Developer with Terminal Illness Hopes to Opt Out of Death

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

Letter Writing Campaign

My good friend, Hannah, has started this letter writing campaign. Here is her appeal:

Christmas 2012

Dear Friends,

Funding for the Attendant Care Waiver/Act 150 Program has essentially been frozen in Pennsylvania due to the lack of movement on the federal budget. Act 150 provides funding for supports and services that allow people with physical disabilities to continue to live at home with their families. This funding is vital for the well-being of Aaron and his family.

My response to the FDA's Prescription Drug User Fee Act Patient-Focused Drug Development Meeting

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.

The Evil Empire

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

Syndicate content

The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.