Appeal for ALS sufferer Aaron Winborn
advancedatheist 13 Jan 2013
http://venturist.inf...rn-charity.html
Aaron Winborn's story
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.
tham 15 Jan 2013
An ALS thread has been started under "Medicine and Diseases".
http://www.longecity...-drugs-for-als/
Shannon Vyff 19 Jan 2013
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.
Shannon Vyff 19 Jan 2013
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
Aaron Winborn 05 Apr 2013
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.
caliban 08 Apr 2013
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.
Shannon Vyff 09 Apr 2013
YOLF 01 May 2013
IDoNotWantToDie 04 May 2013
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.
YOLF 04 May 2013
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.
Reformed-Redan 27 May 2013
Reformed-Redan 29 May 2013
YOLF 29 May 2013
Reformed-Redan 29 May 2013
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.
YOLF 29 May 2013
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!
Reformed-Redan 29 May 2013
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.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!
YOLF 29 May 2013
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.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!
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.
Reformed-Redan 29 May 2013
Which video? I'm not sure what or where they're source for that quote is from.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.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!
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
YOLF 29 May 2013
"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/
Shannon Vyff 30 May 2013
caliban 02 Jun 2013
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.
enoonsti 04 Jun 2013
I have marginally raised the ceiling by another $100
You might want to raise it by another $100 or so
caliban 05 Jun 2013
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.
Reformed-Redan 18 Jun 2013
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.
Shannon Vyff 20 Jun 2013
Shannon Vyff 22 Jun 2013
______________
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