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Appeal for ALS sufferer Aaron Winborn

cryonics society for venturism

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#1 advancedatheist

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Posted 13 January 2013 - 04:02 PM


Aaron would need to raise $30,000 for a CI cryosuspension, so please consider donating to the Venturists for his cryopreservation fund. (Mark Plus)

http://venturist.inf...rn-charity.html


Aaron Winborn's story



Posted Image





My name is Aaron Winborn. I am a 45 year old web developer and author, and the father of 2 young girls, and our lives were upended last year when I received the devastating diagnosis of ALS, more frequently known as Lou Gehrig's disease. It all started in August of 2012, soon after the birth of our younger daughter, when I noticed that I had difficulty clipping my nails. At 1st, I thought it was the clippers, until I threw out that pair and tried another. I began to lose my grip strength, and I quickly developed weakness in my arms. I went 1st to a chiropractor, suspecting carpal tunnel syndrome. Things escalated from there, until I was sitting in the neurologist's office and listening to Dr. Simmons tell me that I had an incurable terminal illness, in which chances were even that I would be dead in 2 to 3 years. And even if I beat the odds and am one of the lucky 10% who go on to survive the decade, it will be in a locked-in state, completely paralyzed, like Stephen Hawking.

I have had a full life, full of adventures and exciting times. When I was 19, I lived in a monastic retreat center briefly, before living with and working for Elisabeth Kubler-Ross, the author of On Death and Dying. After that, I lived in a commune in England, where I helped to build a meeting house. Then back stateside, I worked in a corporate culture for a few years. After some soul-searching, I left that, and flirted with a few jobs, including waiting tables during the graveyard shift at IHOP, working in a garden nursery, and running a flight simulator for the Navy. When I learned about Sudbury schools, and a new school being built in North Carolina, I dropped everything and moved there to be part of its startup. That began a lifelong commitment to this Democratic, age mixed, non-coercive model of schooling, where I worked at another similar school in Connecticut. I also worked as a puppeteer in 2 different puppet theater companies. Somewhere in all of that, I lived for a few months in another monastery, and met soon after my lifelong partner, Gwen.

She changed my life. We had our 1st daughter, Ashlin, in 2003, and decided to move to a place closer to family, as we were both from the South. We chose Harrisburg, Pennsylvania, for The Circle School, so that Ashlin would be able to experience that model of schooling. Also about this time, I chose to work for Advomatic, as a web developer. In 2008, I wrote a technical book, Drupal Multimedia. Sabina was born in 2010, and has brought much joy to our lives. We do not regret her being with us, even though we would have chosen not to have her, had we known earlier about my upcoming diagnosis, and just how difficult that life was about to become.

As I said, I have had a full life, and I know that many might say that I should be content with that, and accept my upcoming death. I have even been told such by my primary care physician, whom I have since fired; I wrote about that on my blog at http://aaronwinborn....heaven-can-wait

As you can guess, that is not option for me. I love life too much, and have too much to do still. At the same time, I need to be realistic, and make responsible choices. Currently, from society's perspective, my only available choices are to die sometime within the next year from respiratory failure, or get a tracheostomy and use invasive artificial ventilation, and most likely die within the next 5 to 8 years from pneumonia.

I do not accept either of those choices. It is not that I am afraid of death; to the contrary, I strongly believe that I am not afraid to die. Rather, I am saddened by the prospect.

My arms and hands are already paralyzed, and my breathing is severely compromised. I currently use DragonDictate to type on the computer, and as my voice begins to fail, I am switching to an eye gaze tracker. I am in a power wheelchair, and we have moved into an accessible home. Technology holds the only hope for a person with ALS, where medical science has all but given up. I look forward to a day when, even if we have not cured all diseases, at least we have tackled this, the living nightmare that no one should have to endure.

Thus, I come to this prestigious circle of like-minded people, asking you for help. Life insurance, the usual method for funding one's cryopreservation, is out of reach for me, with the diagnosis of a terminal illness. Likewise, it is not an option for me to self-fund it, both because of the current and upcoming medical expenses, and to ensure that my family is provided for after I have gone on. I have blogged about our financial situation at http://aaronwinborn....ial-needs-trust but it is out of date, as on top of all of our expenses, I am now applying for disability under Social Security, and Medicaid, which has rather severe restrictions on income and assets.

Thank you for considering my situation. I hope you find it in your hearts to help us out.

Stay strong,
Aaron Winborn


You can read more about amyotrophic lateral sclerosis (ALS), a.k.a. "Lou Gehrig's Disease, at this link.

#2 tham

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Posted 15 January 2013 - 09:22 AM




An ALS thread has been started under "Medicine and Diseases".

http://www.longecity...-drugs-for-als/







#3 Shannon Vyff

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Posted 19 January 2013 - 05:25 AM

Kim, the Society for Venturism's last Cryonics Charity recipient had wanted to help Aaron Winborn but she ran out of time.



Kim knew about the next charity recipient that the Society for Venturism is taking on for 2013, a man struggling with ALS, Aaron Winborn. She wrote to him on 12-13-12 saying that she wanted to help promote his charity, and also hoped that people who supported her would support his case. She was hopeful that the Society for Venturism would be successful in gathering donations for further charity cases in the future. When she had written him she had apologized to him for not helping more, explaining that her condition had deteriorated. He had responded to her; "My condition as well is beginning to worsen; my breathing has declined considerably, and my FVC has reached 25%, far below the threshold of 35%, when respiratory failure is imminent and can happen at any time. My only option at this point is to opt for invasive mechanical ventilation, which may give me a 50% chance of surviving a year." Sadly Kim's health kept her from being able to help Aaron as much as she wanted, and also his own health has kept him from being as active as he would like.
Here is the link Advanced Atheist already posted that has the cryonics charity donate button:
http://www.venturist...rn-charity.html
Please donate if you are able, every amount helps as this is the very beginning of the cryonics charity campaign for Aaron and it is not known how much time he has as his condition has deteriorated more rapidly than expected since November. The amount needed at most will be $32,000.00 for a $28,000.00 suspension at Cryonics Institute and transportation costs, so even small donations will help reach the goal.

Kim was very thankful for all the support she received, she told Aaron to keep his options open for Cryonics Institute or Alcor--he said that he hoped enough funds will be raised for a cryonics suspension with Cryonics Institute and that he should have a contract with him by this January. The Society for Venturism has started collecting funds for him and is working with him to have the funds ready for the cryonics organization he contracts with.

All funds collected go to the cryonics organization that the recipient has contracted with, and not to the individual directly. Left over funds, if there are any after a recipient is preserved, will go to help a future charity recipient.

Shannon Vyff
Society for Venturism Director, Alcor and Cryonics Institute Member, LongeCity Director

Edited by Shannon Vyff, 20 February 2013 - 11:29 PM.


#4 Shannon Vyff

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Posted 19 January 2013 - 05:30 AM

PS I will share the LongeCity ALS thread with Aaron, I'm communicating with him currently about setting up an interview time this next week. I will be finding out how far along he is with his CI contract, and along with interviewing him will hopefully be interviewing his wife. We are just starting his charity fund, and it will likely take longer to raise the funds for him to have a suspension that it was for Kim. I am hoping that many that remember ImmInst/LongeCity lifetime and longtime member William O'Rights, and how down to the wire we were while just barely raising enough funds in time to preserve him--and will help get Aaron Winborn's campaign rolling.

Here is the story I got up today: http://venturist.inf...rn-charity.html

Please read the plea Aaron made today to an audience that is unfamiliar with extreme life extension, cryonics etc.: http://aaronwinborn....s-opt-out-death

#5 Aaron Winborn

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Posted 05 April 2013 - 02:35 AM

Hello, this is Aaron Winborn. I am introducing myself to all you forward-thinking folks. I am browsig the forums now; there's some good discussions in here. I can't begin to thank everyone who's helped out with the fundraiser to secure my future cryonic preservation so far. It's amazing that the cryonic and longevity communities are so strong as to reach out a helping hand to people such as Kim Suozzi and myself, victims of terminal illnesses, and help out with our dying wishes.

I have recently recorded a video with my family, where we introduce the concept of cryonics to the general public, and also about my ALS. I am currently unable to post links on the forum, but if you want to see it, you can go to youtube.com/aaronwinborn.

Thanks again for all you are doing.

Aaron

ps. I will do my best to keep up with this thread, but please be aware that as I use an eye gazing device to control the computer, my response time may be slow. Still, feel free to ask me anything and I'll do my best to respond.
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#6 caliban

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Posted 08 April 2013 - 08:06 PM

LongeCity, in collaboration with the Venturists has decided to support this case.

To be sure, cryonics is crucially dependent on individuals making their own arrangements, ideally early in life where this is still financially possible to virtually everyone in the industrialised world. However, there will be some 'hard cases' this is one of them. The life extension community would not deserve that name if it turned its back on those who have fallen on hard times.

As a community, we may not be able to fund the full costs of a cryonics suspension, but we can at least set a sign of passion and compassion, a sign of support for others and for the common cause.


donate today!

Donations received through this fundraiser will be used only for the purposes of bona-fide cryonics hardship cases. Should we fail to reach the aim in this case or not be able to use the funds, the donations received will be integrated into our 'Bill O Rights Cryonics charity fund and will be used to support others in need of cryonics support.
If you plan to make a larger donation ($300+) or need a receipt for tax-deducible purposes, please contact or treasurer.
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#7 Shannon Vyff

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Posted 09 April 2013 - 01:00 AM

This is a matching donation, so whatever you donate will be matched and effectively will be twice the amount.

#8 caliban

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Posted 23 April 2013 - 01:03 AM



#9 YOLF

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Posted 01 May 2013 - 04:42 AM

We should also raise money to fund cryo-insurance, or an investment vehicle to cryo-preserve the rest of his family? Is this a case of FALS?
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#10 IDoNotWantToDie

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Posted 04 May 2013 - 12:19 PM

How can I donate to a guy that is NOT afraid of death? can one truly appreciate life without the fear of death? Im just not sure about this guy, dont get me wrong he sounds like a great human being but how can i in good conscious donate
to someone who doesnt fear death and therefor truely appreciate his own life. fear of death is what makes every second of my life precious. should we give money to a guy who in his own words " has lived a full life" and who clearly has by his own descriptions, and possibly grant him immortality if he doesnt fully appreciate his own life and has no fear of death. im thinking this one over.
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#11 YOLF

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Posted 04 May 2013 - 01:33 PM

I don't think any of that matters. Shannon Viff has already said that if he doesn't get frozen, the money goes to the next hard case. Whether one fears death or not, there is no legit reason to let someone die/die permanently. The important thing is that Aaron wants to live. You gunna help him live, or are you going to let him die?

The situation of fearing death is a little muxed up IMO. What does it really mean when someone says they do or they don't? Some don't fear death because they believe in a god. Some don't fear death because they believe in cryonics. Some don't believe in death because they are nontheists/atheists and have grown strong knowing that there is no god. Some don't fear death because they know there isn't a judgement. Some believe in a judgement and believe they will be judged as having lived righteous. Some fear death because they fear judgement, and even then we should still help. We hardly need to triage cryonics patients, it's not like they are happening every day and we don't have the space for them. Every one we add benefits everyone.
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#12 redan

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Posted 27 May 2013 - 05:44 PM

I really hope we can get to 1000 for Aaron.
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#13 redan

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Posted 27 May 2013 - 05:52 PM

I just made a donation to get to 100% for Aaron Winborn. I hope it works out for him and his family. Hoping Longecity can match by thrice the donation amount. :~
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#14 redan

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Posted 29 May 2013 - 12:09 AM

Are we still collecting for Aaron Winborn? I thought we got to 100%.

#15 YOLF

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Posted 29 May 2013 - 12:47 AM

It wouldn't hurt to keep collecting. It's going to take him $30-35K to make it. So anything that gets collected in addition would help alot too. Good luck Aaron! If all goes well, I'll be the guy who's there when you wake up!

#16 redan

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Posted 29 May 2013 - 01:23 AM

I wish to bring attention to Neuralstems new technology for ALS sufferers. It has shown promising results in slowing the progression of ALS. I think they are recruiting ALS sufferers for their next phase.

Here are some papers from a quick google search:
http://www.neuralste...therapy-for-als
http://www.neuralste...tem-in-the-news
https://www.ncbi.nlm...pubmed/22415942
http://alsn.mda.org/...ccessful-so-far
http://seekingalpha....-on-to-phase-ii
http://www.emoryheal.../als-study.html
http://www.prnewswir...-105166234.html

The sooner their leading compound is delivered the better. Just keeping up hope.
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#17 YOLF

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Posted 29 May 2013 - 03:15 AM

Sounds very interesting, though just a few thoughts...

I don't approve of abortion, even for a child with a disease, I'd rather see them live and be cryopreserved. Though it would certainly be a waste to let someone die or suffer when the damage to the fetus is already done and they are being preserved for use in stem cell therapy which almost guarantees that they will survive until the tech exists to return them to conventional life.

I do hope that someday all of these embryonic and fetal stem cell lines can be born as complete humans or be made into embryos for those who can't have their own children... Otherwise we're just benefiting from another's murder. But he is a fool who won't help a stem cell line live. Go for it Aaron! Even if we wind up recovering their cells from you, they will be preserved :) How cool is that? It's like a twofer!

#18 redan

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Posted 29 May 2013 - 04:10 AM

Sounds very interesting, though just a few thoughts...

I don't approve of abortion, even for a child with a disease, I'd rather see them live and be cryopreserved. Though it would certainly be a waste to let someone die or suffer when the damage to the fetus is already done and they are being preserved for use in stem cell therapy which almost guarantees that they will survive until the tech exists to return them to conventional life.

I do hope that someday all of these embryonic and fetal stem cell lines can be born as complete humans or be made into embryos for those who can't have their own children... Otherwise we're just benefiting from another's murder. But he is a fool who won't help a stem cell line live. Go for it Aaron! Even if we wind up recovering their cells from you, they will be preserved :) How cool is that? It's like a twofer!

Oh, please don't have the negative connotation associated with "stem cells" lead you to the conclusion that all stem cells are from aborted fetuses. You might want to read up on how they achieve their results.
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#19 YOLF

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Posted 29 May 2013 - 05:11 AM

Sounds very interesting, though just a few thoughts...

I don't approve of abortion, even for a child with a disease, I'd rather see them live and be cryopreserved. Though it would certainly be a waste to let someone die or suffer when the damage to the fetus is already done and they are being preserved for use in stem cell therapy which almost guarantees that they will survive until the tech exists to return them to conventional life.

I do hope that someday all of these embryonic and fetal stem cell lines can be born as complete humans or be made into embryos for those who can't have their own children... Otherwise we're just benefiting from another's murder. But he is a fool who won't help a stem cell line live. Go for it Aaron! Even if we wind up recovering their cells from you, they will be preserved :) How cool is that? It's like a twofer!

Oh, please don't have the negative connotation associated with "stem cells" lead you to the conclusion that all stem cells are from aborted fetuses. You might want to read up on how they achieve their results.


This chick says the cells are from a fetus aborted 12 years ago at about 2 minutes. It's also in the text.
http://www.myfoxatla...em-cell-surgery

I know that most don't come from fetuses and embryos as most of them are just thrown away with no hope for recovery and there are only something like 100 legal embryonic/fetal stem cell lines floating around.

Edited by cryonicsculture, 29 May 2013 - 05:14 AM.


#20 redan

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Posted 29 May 2013 - 05:14 AM

Sounds very interesting, though just a few thoughts...

I don't approve of abortion, even for a child with a disease, I'd rather see them live and be cryopreserved. Though it would certainly be a waste to let someone die or suffer when the damage to the fetus is already done and they are being preserved for use in stem cell therapy which almost guarantees that they will survive until the tech exists to return them to conventional life.

I do hope that someday all of these embryonic and fetal stem cell lines can be born as complete humans or be made into embryos for those who can't have their own children... Otherwise we're just benefiting from another's murder. But he is a fool who won't help a stem cell line live. Go for it Aaron! Even if we wind up recovering their cells from you, they will be preserved :) How cool is that? It's like a twofer!

Oh, please don't have the negative connotation associated with "stem cells" lead you to the conclusion that all stem cells are from aborted fetuses. You might want to read up on how they achieve their results.


This chick says the cells are from a fetus aborted 12 years ago at about 2 minutes. It's also in the text.
http://www.myfoxatla...em-cell-surgery

Which video? I'm not sure what or where they're source for that quote is from.

#21 YOLF

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Posted 29 May 2013 - 05:20 AM

The one that page, it was the destination of a link in one of the other articles you posted.

"NSI-566RSC, isolated from an 8-week fetal spinal cord, is a novel human neural stem cell line with robust growth properties and neurogenic potential."

From:
http://www.ncbi.nlm....les/PMC2908506/

#22 Shannon Vyff

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Posted 30 May 2013 - 12:45 AM

LongeCity is still accepting donations for Aaron, and there is still space to match donations. Contact the board with any questions. Unfortunately Aaron's Venturist campaign is still just under 15K. When the current LongeCity amount will be added, then his campaign will be at about 17K. So, we have a long ways to go. I'm hoping that when the upcoming NYTs article about Kim comes out, that perhaps we will get some more donations for Aaron. I've been contacting the larger donors for Kim's campaign, but so far only 1 out of 5 has stepped up (their anonymous donations is included in the just under 15K amount) --the others cite "waiting for more people to donate to his cause." If no one does, then we will not have the funds we need for him when he arrests. Every person that we can cryo-preserve helps the cryonics movement, the cryonics charity is good outreach for the cryonics community as well.
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#23 caliban

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Posted 02 June 2013 - 10:13 PM

Fantastic news just in: we have received a single donation that brought us up to the $1000 mark!


In light of the comments by Shannon above, I have marginally raised the ceiling by another $100, just in case there are other small donors out there who would have missed a chance to see their donation doubled.
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#24 enoonsti

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Posted 04 June 2013 - 01:47 AM

I have marginally raised the ceiling by another $100



You might want to raise it by another $100 or so ;)
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#25 caliban

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Posted 05 June 2013 - 12:01 AM

Thanks eenosti for your very generous donation. :)

Special thanks go to Shawn Wierzbicki who made by far the biggest donation!

Thanks indeed to all donors listed here that helped us with this fundraiser.

As it stands currently, LongeCity's budget for matching is now used up, but everyone is still very welcome to donate normally - we will pass on every single dollar received to the Venturist fund.

#26 redan

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Posted 18 June 2013 - 03:09 AM

Here is an article on Aaron Winborn at Kurtzweilai

http://www.kurzweila...e-cryopreserved

Hope we can get to the final amount soon as Aaron's health is rapidly declining. I'm afraid his neuronal structure (memories and such) is being altered by the disease.

#27 Shannon Vyff

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Posted 20 June 2013 - 01:06 AM

That is always a concern and was a concern with Kim's brain tumor as well. So far Aaron is mentally still able to understand what he reads and compose things, it is more his auditory processing that is messed up. We do need to get the amount raise though because he is declining, and so he can have peace of mind.

#28 Shannon Vyff

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Posted 22 June 2013 - 12:15 AM

Please read the following announcement approved by the Society for Venturism that I am happy to share regarding Aaron Winborn's cryonics charity campaign:
______________

Here is an update on the progress of our latest campaign to help a dying young father, Aaron Winborn, get a suspension.

The Cryonics Institute charges $28,000 for a suspension if the member is a life member. If the member is not a life member, they Charge $35,000.

So I have advised Aaron to pay a $1,250 life membership fee and fill out the paperwork and become a life member. I have told Aaron that if he does that, we will release him from his pledge to pay at least $5,000 of his suspension costs. So assuming Aaron becomes a CI Life Member quickly, then we will need a total of $28,000 in the bank to guarantee payment and to be sent to CI as soon as they start the suspension.

At present we have $16,000 in the bank for Aarons suspension.

Bill Faloon of the Life Extension Foundation in Florida, a place where many cryonicists get their supplements, has just let me know that THE LIFE EXTENSION FOUNDATION WILL BE SENDING A CHECK TO THE VENTURIST FOR $10,000 TO GO TOWARDS AARON'S SUSPENSION COSTS. When this arrives in a few days we will have a total of $26,000 in the bank for the suspension and we will be just $2,000 short of the ful $28,000 (assuming Aaron has procured his life membership at CI).

I want to thank Bill, Saul and the LEF - AND ALL THE CRYONICISTS WHO HAVE CONTRIBUTED. Contrary to what some non-cryonics people claim - that cryonicists are a selfish group, I think your actions in this campaign have proven that we are a charitable and generous group of people that care about others. Everyone who has contributed in this matter has a right to feel proud.

So as soon as we can gather $2,000 more, this campaign can be closed. If any additional money comes in we are going to use it to defray some of the costs in the cryonics convention we are hosting in October. We will be trying to raise money for that event to help pay some of the expenses so that we can keep the registration fee very low and make this a very affordable top notch cryonics convention.

David Pizer

#29 Shannon Vyff

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Posted 22 June 2013 - 06:16 AM

Even better news- I found out that LongeCity's funds raised through the recent William O'Rights Memorial Cryonics Charity matching drive had not yet been sent in. Our treasurer confirmed they are being sent and they will finish the campaign as 2K is what we raised and 2K is what is still needed. There will be an article coming out in Kirzweil A.I. about how LongeCity helped finish the campaign. Thank you to all the members who donated to our matching fundraiser and to LongeCity for matching the donations!

#30 YOLF

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Posted 22 June 2013 - 07:44 AM

Congratulations Aaron!





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