Mark McAllister - 2.0 Project

Chat Topic: Mark McAllister - 2.0 Project
Mark is a 20 year old graphic designer from Sudbury Ontario, Canada. The 2.0 Project aims to raise funds for his eventual neurosuspension at Alcor. Spinal Muscular Atrophy, a degenerative condition, will see Mark immobile by late twenties and dead by early thirties.

Chat Time: Sun Sept 4 @ 8 pm Eastern (Time Zone Guide)
Chat Room: http://www.imminst.org/chat


Mark McAllister
http://www.2dot0.org

Mark's Intro Letter to Immnst (July 10, 2005)

Allow me to introduce myself. My name is Mark McAllister, and among other things I run the 2.0 Project. We both share the goal of conquering death, so I've decided to reach out to you for assistance in getting the project off the ground.

First, let me tell you a bit more about myself. I'm a 20 year old graphic designer from Sudbury Ontario, Canada, and I'm trying to raise funds for my eventual neurosuspension at Alcor. Now, normally this wouldn't be a problem for someone my age, but unfortunately my situation is different than most. I have Spinal Muscular Atrophy, a degenerative condition that will see me completely immobile by my late twenties and dead by my early thirties. For obvious reasons, this bars me from using life insurance to fund my Alcor membership.

This reality lead to the creation of the 2.0 Project. While the immediate goal of the project is to raise fund for my suspension, this is not the only goal. I'm a lot like you are, I view death as a horrible oblivion. It is my hope that the 2.0 Project can grow into a sister program of sorts to the Immortality Institute, promoting the message of life and helping those who share my dilemma.

I have ideas for the future of the project, but I would love your input on how I can meaningfully assist the Immortality Institute with this endeavor. Furthermore, any assistance you could give me in promoting the Project would be greatly appreciated. Please take a look at the project's website (www.2dot0.org) for further details on me and the mission.

I appreciate your time and hope to hear from you.

Sincerely,

Mark McAllister
mark@2dot0.org

Full Member Discussion Topic

Mark's chat starts soon...

Partial transcript of chat in progress...

<markmc> Hello all. Special thanks to Bruce for setting this up.
<Jonesey> hi mark
<enoosphere> Hello, Mark.
<BJKlein_> Welcome, Mark... when did you first know you had Spinal Muscular Atrophy?
<markmc> I've known it my whole life. I was diagnosed at 11 months old.
<BJKlein_> How many people have this disease world-wide?
<dantecubit> when did your parents tell you?
<markmc> I couldn't give you an exact number, but it is rare. Other forms of muscular dystrophy are more common
<markmc> I'm not sure, but I knew I was disabled from an early age. I got my first wheelchair at 3 years old.
<BJKlein_> hmm, reading on wikipedia... "It is a progressive, symmetrical muscle weakness which usually presents itself within the first six months of life. Death usually occurs between six and twenty months, either of respiratory failure or secondary to chest infection. There are different forms according to age of onset.
<Schaefer> "The incidence of [motor neurone disease] is approximately 1-5 out of 100,000 people, and men have a 20% higher rate of incidence than women. Approximately 5600 cases are diagnosed in the U.S. every year." -- Wikipedia
<BJKlein_> seems you're able to live longer than average?
<markmc> That would be SMA Type I
<BJKlein_> ah... ok
<markmc> I have Type II
<Jonesey> is it similar to Friedreich's Ataxia , mark?
<BJKlein_> Intermediate SMA
<markmc> I was originally diagnosed with Type I, but that was reevaluated as I aged.
<Schaefer> How much mobility do you have now?
<markmc> I'm not familiar with Friedreich's Ataxia, care to fill me in?
<Jonesey> Friedreich's ataxia and muscular dystrophy, though often compared, are completely different diseases. Muscular dystrophy is the result of muscle tissue degeneration whereas Friedreich's ataxia is the result of nervous tissue degeneration (a trinucleotide repeat disorder). Both are researched by the Muscular Dystrophy Association.
<Jonesey>
<Jonesey> http://en.wikipedia....dreich's_ataxia
<markmc> I have limited use of my right arm, no use of my left or my legs. I can still support my head and feed myself.
<BJKlein_> from wiki: SMA is caused by a faulty gene. In a new study in mice, scientists found that inserting extra copies of a specific gene helped the mice produce sufficient amounts of a protein called SMN (Survival Motor Neuron).
<markmc> That's right.
<BJKlein_> perhaps there is hope that this will be in time for humans?
<BJKlein_> or for you, rather..
<markmc> There's always hope. Right now there are clinical trials to test the effects of valoric acid on young SMA patients.
<BJKlein_> have you participated in any trials?
* Joins: rotaerk
<markmc> Forgive me if my responses are slow, I'm a slow typer.
<BJKlein_> no problem...

<Jonesey> no worries, mark
<Jonesey> lots of slow typists here!
<markmc> Not recently, as I'm too old. When I was younger I was in a trial that tested the effects of shock therapy on muscle mass
<BJKlein_> I remember recently you posted you may have found help for your cryonics policy with Alcor?
<BJKlein_> Mark's project... http://www.2dot0.org/index2.html
<markmc> Yes and no. I've been trying to find insurance avenues, but I've hit a dead end. The plan I was told I'd be eligible for requires more movement than I have. I need to note that on the site. Apparently, I qualify for a $100,000 plan, but I need to be 25
<Jonesey> is it all or nothing? are you able to get a policy for a smaller amount?
<markmc> I was disappointed with that.
<markmc> All or nothing really. The insurance firms seem unwilling to deal with anything resembling muscular dystrophy
<Jonesey> understandable, but unfortunate
<BJKlein_> yes, as this is your life that hangs in the ballance, that should qualify as a big disapointment..
<markmc> I've considered legal action, but I doubt I'd get anywhere
<BJKlein_> is your desire for cryonis more to 1) see the future, 2) because death is oblivion, 3) other ?
<markmc> A bit of each really. I often tell people that I want to be around to see the universe end, as morbid as that may sound. As for death being oblivion, I'm not certain of that. I don't know what happens after death, and given the choice I'd rather not risk finding out. As for other, I haven't lived my life as I would have liked, I'd like a chance to change that
<BJKlein_> by the way, congratulation on graduating with honors...
<BJKlein_> and thank you for helping imminst with our new logo graphic..
<markmc> Thank you Highest GPA in the class
<BJKlein_> i've already used the image in a mailing to promote the upcoming nov 5 conference
<dantecubit> yeah, awesome logo
<markmc> My pleasure
<enoosphere> You changed the logo on the 2.0 project site as well...you do good work.
<BJKlein_> so you're now working with the company 50C.. via your home?

<_M_> Yup, I'm working for 50 Carleton out of my home. It has its ups and downs
<BJKlein_> have you considered Cryonics Institute as a backup, less expensive, alternative to Alcor?
<Jonesey> that was the reason for my q about getting a smaller amount of insurance, BJKlein_
* BJKlein_ nods
<_M_> Yes, I have. My main reason for choosing Alcor was vitrification, but I've noticed CI is moving towards offering this as well. If I'm comfortable with what I see from them, they're certainly an option.
<BJKlein_> Note: Friend, James Swayze, a transhumanist, cryonics, quadriplegic, has been successful in securing a contract via donations partially from CI Pres. Robert Ettinger... and others..
<BJKlein_> a contract for cryonics with Cryonics Institute..
<BJKlein_> however, if I were in you position, I'd focus on Alcor first, keeping in mind the timing of my evential demise that CI may be a backup
<BJKlein_> Do you have a feeling for how long you have now?
<_M_> That's the plan. If worse comes to worse, freezing is always an option. But I want the best chance possible.
* Joins: dantecubit
* Joins: dantecubit
<BJKlein_> Also, as you've considered I'm sure, as time goes on, your ability to promote the 2.0 Project will be less as your body degrades to the disease...
<_M_> Hard to say. Modern medicine will probably carry me into my mid-thirties. I expect most of my mobility to be gone within 5 years.
<_M_> Quite true. Just have to make use of the time I have I suppose
<dantecubit> you mentioned you are unsure what (if anything) is after death. are you religious?
<_M_> Once I lose my right arm, I'll probably go back to school. Current technologies can help me write well enough.
<_M_> No, I'm agnostic. I don't deny the existence of a god, but it's largely irrelevent to me.
<_M_> I actually have a sour view towards religion (including atheism)
<BJKlein_> Mark, do you recognize that we're animals?
<_M_> Interesting question. I believe in evolution, so I suppose the answer is yes. Despite the way we treat each other, I'd like to think we're better than animals though.
<BJKlein_> I see from your web that you consider yourself a transhumanist..
<_M_> For the most part, yes.
<BJKlein_> how would you describe your transhumanism?
<_M_> The same as anyone else would, minus the blind optimism. I'm sure we've all heard the joke that the Singularity is the Rapture for "geeks". Sometimes this rings true. I'm afraid that transhumanism is becoming dogmatic, and I know this will only serve to hurt our goals.
<Schaefer> What dogma in particular?
* BJKlein_ Official ImmInst Chat Ends
<BJKlein_> all should please feel free to stay longer...
* Joins: liorrh
<_M_> That the Singularity is unavoidable. As much as I love Ray Kurzweil, he's a perfect example of rampant optimism. On whole, I think we forget that we're a small minority who finds posthumanism attractive
<Schaefer> I suppose I agree. I appreciate Kurzweil's presence as a popularizer, but his philosophy seems to oppose actually getting anything done in regards to the Singularity.

<enoosphere> Is the 2.0 Project something you can use to shed more light on this issue (dogmatic thought in Transhumanism) or will it stay out of the controveries in technological progressive thought?
<_M_> Fantistic question enoosphere, as it brings me to what the 2.0 Project is actually about
<_M_> The 2.0 Project will eventially evolve into a massive communication effort that will promote transhumanist ideals. My original inspiration for this was Bruce Mau's Massive Change. Massive Change is a campaign that seeks to redefine the role of the designer as the architect of humanity. The campaign is carried out through large grassroots advertising campaigns and exhibitions. I hope to apply this model to our cause, and make transhumanist
<BJKlein_> ah, sorry the chat has a limit to text length...
<_M_> Thanks for your donation dantecubit!
<_M_> Where'd it cut off?
<BJKlein_> "this model to our cause, and make transhumanist..."
<_M_> I hope to apply this model to our cause, and make transhumanist ideas more accessible to the average person
* BJKlein_ nods
<enoosphere> I think the donation goal helps put a human face on that model. Physical immortality (as science and technology do in general) often comes across as arrogant and cold to some people.
<enoosphere> How do you plan to develop that model?
<_M_> Quite true. I often get questions about why I would even want to live forever.
<_M_> It will start with a new website, which I hope to get out by the end of the year. The site will serve as the backbone of the campaign (primarily as it's the cheapest way to advertise). During this time I hope to assemble a team to help me shape the communication directive. It's still too early at this point to say what shape the campaign will take, as it'll all depend on my resources. You'll notice that I chose a black/white colour scheme
<BJKlein_> cuttoff.. "that I chose a black/white colour scheme..."
<_M_> You'll notice that I chose a black/white colour scheme for the project. That was primarily to keep printing costs low. Sorry, I'm long winded
<BJKlein_> heh.. np
<_M_> I'd love to set up some exhibitions of transhumanist art, but that's a far way off right now
* Joins: _M_
<_M_> Booted again
<BJKlein_> welcome back...
<_M_> Damn router
<BJKlein_> have you contacted Natasha Vita-More as she's the head of Transhumanist Arts and Culture
<_M_> I'm planning on doing that shortly. My job has kept me busy for the past few weeks, but I'm hoping Natasha will be interested in a partnership of some sorts. I find transhumanist art is under utilized as a promotional tool.
<_M_> I'd just like to say, as much as I'd like your money (joking), you should all donate to the Red Cross. I'm horrified by the situation in New Orleans
<enoosphere> Any good movement will require a strong artistic component. Sometimes art speaks louder than words.
<dantecubit> i donate more heavily to MSF, trust me
<_M_> Very true.

<enoosphere> That situation in New Orleans puts a fine point on the physical immortality movement.
<enoosphere> And provides some support for you believe that the Singularity will require some hard work if we want it to happen.
<enoosphere> you believe = your belief.
<_M_> Art has kind of lost momentum I find. In the past, art movements spanned all forms of communication and lifestyle. That has waned since the arrival of post modernism. Art has an umistakable power to influence the masses
<dantecubit> perhaps it has been replaced by 'survivor'
<enoosphere> Say it is not so :(
<_M_> Heh.
<enoosphere> Ayn Rand's horrific "the mundane becomes high art" scenario.
<_M_> Well, I think that's that. Was there anything else you wanted to know? I'm in no rush to split, but I don't want to bore you for too long.
<enoosphere> Not boring at all
<dantecubit> <-- [yawn]
<BJKlein_> heh...
<dantecubit> JK
<_M_> Heh.
<enoosphere> Could you provide a bit of an update on the 2.0 Project?
<enoosphere> Response, where you are at?
<enoosphere> I see the donation mark on the site, just wondering what's next in the short term.
<dantecubit> i've actually found this very interesting
<_M_> Well, the tally on the site is incorrect, as it took into account the insurance plan I was told I would receive. Minus that, I'm at $443.06 so far. Not a lot yet, but not bad given the limited promotion efforts so far.
<_M_> I'm pretty sour about that insurance thing.
<BJKlein_> that's a great start...
<BJKlein_> yeah, the insurance thing sucks.. for sure..
<_M_> Maybe I should just hire an actor to play me
<BJKlein_> well, whatever it takes to live...
<BJKlein_> perhaps hire an actor for $400?
<dantecubit> excuse me if this comment comes out of the blue or is irrelevant, but the way i see it, your human rights are being violated. everyone deserves to have a long, productive life
<_M_> I would, but the thought of spending the rest of my days in jail for insurance fraud isn't too appeasing.
<BJKlein_> true...
<enoosphere> I definitely wish you best success with the project and your goals. Lots of work to do. Hopefully your outreach to transhumanism and physical immortality movements will provide even more options.
<_M_> I totally agree dantecubit. People can die at any minute, life is a crapshoot. Insurance firms need to recognize this
<_M_> Thank you enoosphere.
<enoosphere> Aren't you running for some office as well?
<enoosphere> Definitely need changes in insurance industry.
<_M_> Be sure to check out the Frontier Channel in the coming days (http://www.frontierchannel.tv). ImmInst member Richard Leis conducted a lengthy interview with me, and is writing an article about the project.
<BJKlein_> great... thanks for the link.
<BJKlein_> heh.. i think richard me be here now
<enoosphere> That's me!
<enoosphere>
<BJKlein_> *may
<dantecubit> heh

<_M_> I was planning on running in the upcoming federal election for the Green Party. However, it'll be a winter election, so I felt the party would be better served by someone who can go door to door in the cold.
<_M_> Hey Richard!
<enoosphere> Hey
<dantecubit> do you lean politically toward Green?
* Joins: _Mark_
<_Mark_> I need a new router
<_Mark_> I want to live forever but I can't even network my computers
<dantecubit> even after nanotech, computers will still crash
<enoosphere> lol...well, networks and life extension are hopefully both going through exponential progress.
<_Mark_> Heh heh
<enoosphere> Like the new logo Mark...why the change?
<dantecubit> i've enjoyed this lots. thanks mark, and good luck. gotta jet
<_Mark_> So, now it's time to turn the table. I have a question for you folks
<_Mark_> The new logo...
<_Mark_> The first one was a rush job. It said what it needed to say, but I wasn't happy with it. The new logo is pretty much the same idea, but more visually pleasing.
<BJKlein_> feel free Mark..
<enoosphere> If that was your rush job, please bottle the talent.
<_Mark_> What role do you see ImmInst playing in the future of the 2.0 Project? Likewise, what role do you see the 2.0 Project playing in the future of ImmInst?
<_Mark_> heh, thanks.


<BJKlein_> hmm.. letme see..
<BJKlein_> ImmInst's mission is to serve it's member's needs in the quest to overcome the blight of involuntary death...
<BJKlein_> I suggest that your case is a special ramped upped version of what we all face...
<BJKlein_> a race against time... aging... risk.. involuntary death
<_Mark_> By the way, Bruce and Richard, you guys have been great to me. If you e-mail me your address and size, I'll send you a free 2.0 Project t-shirt.
<BJKlein_> at this time, ImmInst does not have great amounts of money... but we do have valuable tallent and volunteers
<BJKlein_> Thanks, Mark.... appreciate that.
<enoosphere> Thanks, Mark.
<_Mark_> Talent and volunteers go a long way. I'm certainly lacking in manpower at the moment.
<BJKlein_> to which I'm sure we'll be able to find ways to support each other...
<BJKlein_> your help with the imminst graphic is a great example...
<BJKlein_> you have talent... imminst has network...
<BJKlein_> just stay alive long enough for us to help you!
<_Mark_> I'll be around for a few years yet
<BJKlein_> perhaps post more pics of your family, friends to the 2.0 Project website if possible..
<_Mark_> Even though I criticize blind optimism, I'm fairly optimistic the project will succeed in one way or another
<_Mark_> If they're willing, I can defitely do that
<_Mark_> *definitely
<BJKlein_> check: http://imminst.org/f...ST&f=116&t=1927
<BJKlein_> if you've yet to see.. James Swayze
<enoosphere> Visibility seems to be key. Getting the word out.
<_Mark_> Definitely. Keep in mind I'm very open to ideas. If you have thoughts about promotion or direction, feel free to fire them at me
<_Mark_> I'll read over that tonight Bruce. I'm encouraged that someone has done this before
<enoosphere> Well, I'm going to head on out...time to get to work I'll give you an update soon Mark. Goodnight Bruce and everyone else still here.
<_Mark_> Good night Richard, thanks for coming
<BJKlein_> night Richard... i'm best to bed to...
<BJKlein_> thanks again, Mark... keep me posted.
<_Mark_> Well, thank you all. This was a blast.
<_Mark_> I look forward to our continued relationship.
<_Mark_> Night.

Mark is obviously a very gracious, caring individual. At one point he commented that he would rather people give money to the Red Cross, to help with flood relief. What a guy. While I share his sentiments, my thinking was also running along the lines of, "Why him? Why does he deserve to die?" His death is just as arbitrary as those killed in a natural disaster (granted on a smaller scale). Therefore I support organizations such as Doctors Without Borders, as well as making a (lamentably) small donation to the 2.0 Project.

I discussed Mark's project with my family over dinner. My sister (a woman of strong opinions) asserted that he was being "manipulated" and that cryonics is a sham. Mark strikes me as a highly intelligent individual who would be very difficult to manipulate; besides, we all know that's not the case in this situation as Mark is calling the shots. I guess she shares the classic view that people in cryo suspension are dead, end of story. My mom, an MD, pointed out that cryonics can hardly be called either a succes or a failure just yet. Her comment surprised me as I didn't think she knew anything about cryonics. My family is probably a fairly representative sample of the general public-- some will by sympathetic, others resistant.

Thanks for your kind words dantecubit. No donation is too small, you'll be given equal recognition on the project's website. Thanks again to everyone who attended.

The chat was fantastic. I recently interviewed Mark by email and wrote an article about the 2.0 Project for the September 2005 issue of The Frontier Channel, entitled "'It's about life' - Mark McAllister and the 2.0 Project". After reviewing his 2.0 Project site, please consider how physical immortalists, transhumanists, and other technology progressives can help with his and related goals. Donations, publicity, discussion, education...all are important options of support.

Yes, Mark is a worthy recipiant. Along with the 2.0 Project's goal to advance immortalist issues, Mark's personal goal to overcome his accelerated death by the use of cryonics is admirable.