The HeliOS Project is now.....

The HeliOS Project is now.....
Same mission, same folks...just a different name

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Thursday, August 16, 2012

This is where we are.


My name is Diane and Ken is my Life-Partner. I will probably be posting for him from time to time due to his eyes not being able to tolerate the backlight of the monitor. He is down to about 20 minutes a day here because the backlight makes him terribly sick and the dark glasses are helping less and less.

As many of you know, Ken's cancer has just recently begun to spread to his right lymph node but his Oncologist has assured us that this is 80 percent curative if he gets the needed surgery in time. 

Unfortunately, his 1100 dollar a month SSI disability disqualifies him for Medicaid care and the local county low-income insurance he was receiving. This leaves us with about 2 weeks to either raise enough money for at least the OR for the surgery (we are hopeful of finding a surgeon to do the work pro bono) or raise enough money for the entire procedure. We've spent hours upon hours researching and contacting the links some of you have provided but they are so limited in scope that 90 percent of them are not helpful at all.

We are looking at two weeks, maybe three before the cancer spreads past the point of surgery being an option. After that, we've been told just to make him as comfortable as possible until he passes. I'm not ready to accept that.

I know it's a lot of money but recently a bus monitor was donated over a half million dollars in donations for being harassed by a bus full of children.  In only three hours, over 100 thousand dollars was raised yesterday to build a Tesla Museum.  We only need to raise a fraction of that to save a man's life. I think if the Linux community pulls together, we can make this happen.  Ken has done amazing things, not for himself, but for those that needed help the most.  I have heard about a site called Reddit that might be able to help but I have no idea how to access it or post to it. Does anyone have a Reddit account that could pass this news along?

Thomas A. Knight has put up a page that tells Ken's story and he's volunteered to host the fund raising page for this effort. Please help us by a small donation and spreading the word. Ken's done magnificent work for the past 7 years in getting Linux computers into the hands of poor children. I'm just hoping that the community at large sees enough value in Ken to help him beat this monster. Because, as it looks now, you are about the only hope he has.

Ken will be 59 this coming September 2nd.  I want him to be here to celebrate 60.

See Thomas' page here. If the page times out, just hit F5 and it will connect, just be patient and from the bottom of my heart, thank you.
We raised more than enough money, and to be honest, probably too much but you cannot stop the generosity of The Linux community.  As outlined by Thomas in his originating blog, any extra money raised will go to fund Reglue.

Your generosity and sincere care for my well-being and the success of the Reglue project has left a strong, ever-lasting fortress within my heart.  A place, that no matter how crappy life can seem, I can go to refresh my outlook on humanity and the warmth generated by your presence.

All-Righty Then


47 comments:

Thomas A. Knight said...

I've been having issues with my internet connection cutting in and out for the last 24 hours, but rest assured, refresh and it will come back.

If anyone wants the HTML code to host a donation button that will add to this, please email me at taknight@dragon-wing.net and I will be more than happy to send you the code. The most sites that get the word out, the better.

Thomas

mtbkrdave said...

The web site used to raise funds for the harassed bus monitor was http://www.indiegogo.com/ - after the campaign went viral, they ended up raising over $700K. Paypal donation links are a good start, but running a campaign on a site like this probably offers greater exposure. Given the speed at which news can travel through the Linux/FOSS community, I'm sure we can get a lot of eyes on it!

evaline said...

Ok, I asked a friend who is active on Reddit to do a post, I will post back if successful. I also made a request to post on one of my politics blogs, we'll see if that happens. We do need a donation box of some kind.

I am totally positive that we can do this...

Unknown said...

Is there anyone that can start this campaign Dave? Ken surely cannot and I have my hands full with Ken and keeping a house....doing it on a walker to top it off. Maybe you or someone could start it. Let me know if I can supply any info - Diane

evaline said...

Ok, I asked a friend who is active on Reddit to do a post, I will post back if successful. I also made a request to post on one of my politics blogs, we'll see if that happens. We do need a donation box of some kind.

I am totally positive that we can do this...

Diane said...

Email Ken at helios@fixedbylinux.com and I will send you the html code for the donation site. I cannot post it here, not allowed in the comments

Diane

Thomas A. Knight said...

I will look at setting up an IndieGogo.com campaign. That's a great place to do this.

Will post back here once I've got it all figured out.

Thomas

mtbkrdave said...

I'm in the process of setting up an indiegogo now. I'll add Thomas to it as an admin.

Thomas A. Knight said...

Here's the downside to an IndieGogo campaign:

If you don't meet your funding goal, you get nothing.

I'm not sure that's a risk we want to take at this point. Ken needs all the money he can get to make this happen.

The best thing we can do? Assault local and national news outlets, social media, etc with this news and get them to notice. It doesn't take many people reporting the same news before they start taking notice in a serious way.

mtbkrdave said...

Indiegogo campaign is live: http://www.indiegogo.com/helios

mtbkrdave said...

"If you don't meet your funding goal, you get nothing."

This is not the case, at least not how I have this campaign configured. Indiegogo offers the option for "Flexible Funding", in which you receive any donations made, regardless of whether the goal was reached.

Amenditman said...

Diane

A friend who once had an untreatable, fatal heart condition recommends you try to contact the Shriner's/Masonic Medical Research Center. They did an experimental procedure, no cost to him, and he is alive and recovered because of it. It's located in Texas. I will post again later when he gets home and provides all the contact info from his end.

Thomas A. Knight said...

Perfect! And here is the link:

http://igg.me/p/206687?a=1046530

Thomas

Andrew Cater said...

http://flosslinuxblog.blogspot.co.uk/ - which should also reach Planet Debian. Helios Project is/was associated with Software in the Public Interest.

Glad to help a good bloke in the slightest way.

Pedro said...

hi ken and family. I'm so sad to hear this. It seems life keeps giving hard times.

Ever since i started using linux, your stories and actions were always of great inspiration. Ever time i read your blog i was touched by your human side and your perseverance.

I've donate all i could, but being a freelancer in a poor european country in this eurocrisis, i'm afraid 50€ is as much as i can scrape.

Hope to hear good news from you soon!

pedro.

Emanem said...

Hi, I'd like to give a contribution but don't want to use paypal. Is possible to use Google Checkout or Amazon to pay?

Cheers

Diane said...

@ Emanem

http://thomasaknight.com/contactme.php

Contact Thomas via that link and other arrangements can be made....Not sure what they are though.

We do have an Amazon merchant's account but not sure how a donation would work since we pulled most of our merchandise from there. Email Ken helios at fixedbylinux dotcom and let me know how we can do it.

Diane

Andrew Cater said...

Just passed the news to LWN (Linux Weekly News) also pointing them back here for details. Who knows: it may help

ebrke said...

Ken, I'm so sorry to hear about your difficulties. You and Diane are in my thoughts. I've sent what I can via PayPall, and I've posted to Bruno's All Things Linux at Scot's Newsletter Forums hoping to make the community there aware of your situation. Best wishes for your recovery.

Emanem said...

@Diane

Eventually I used Paypal.
All the best of luck!

Cheers

Paul Fernhout said...

While it may be late advice to do much good, getting enough vitamin D, getting enough iodine, and eating lots of fruits, vegetables, and beans can all help the body to resist cancer before it develops (which includes preventing recurrences, so it is still always worth exploring even while doing other treatments). A lot of techies suffer from vitamin D deficiency from working indoors so much (and the US RDA for vitamin D for adults is several times too low), and cancer patients with higher vitamin D levels have better outcomes in studies (that is why dermatologists' well-meant advice to advice to avoid the sun has probably caused ten serious organ cancers for every easy-to-treat skin cancer it has prevented). Iodine, used by the body in programmed cell death to fight cancer, is also something people in the USA are often low on, both from lack of adequate intake (again with a problematical RDA) and also exposure to bromine from eating modern breads (plus other sources of exposure to other halogens from industrial products), where bromine and other halogens compete with iodine. In some cases water fasting can be helpful too (as it activates bodily clean up systems that are perpetually dormant in most US Americans) but a sick person should only do that under a doctor's supervision; in general fruit-and-vegetable-juice fasting is easier on the body, and the phyto-nutrients from vegetables can help the body renew itself. Most US Americans are suffering from vegetable deficiency disease, sunlight deficiency disease, omega-3 deficiency disease, and iodine deficiency disease more than anything else (although other junk in the food supply is not good, either). Avoid all refined carbohydrates, including both flour and sugar, is also important to reduce blood sugar spikes and related inflammation. In that sense, cancer is more of a terrible symptom of those underlying issues than the root cause of disease itself. This page I put together, towards the end, has supporting links to these points and others:
http://www.changemakers.com/discussions/discussion-493#comment-38823

Good luck with a difficult situation. Finding out all the above would not have been possible before the spread of cheap computing. Thanks for helping with that!

arielCo said...

I've tried to spread the word at Slashdot.org, and someone suggested "why not send him to cuba, or another south american country". I won't vouch for cuban health services, but a Latin American country could be the answer.

Diane said...

South American countries are on the table, Ken needs to contact his congressman to help expedite his passport which has long lapsed. They can cut the weeks and weeks wait down to days.

Anonymous said...

If you need someone to personally deliver something like a letter or whatnot to his congressmans office' let me know. I live near DC. If he needs his passport expedited.

Jake@hamburgersushi.com

Anonymous said...

I put up a PayPal Donate Button for a customer a while back and when they went to withdraw, Paypal froze the account because they did not have "Donations to this fund are not tax deductible for federal income tax purposes." under the donate button.

They eventually released the funds to the customer. Just wanted to warn you, so they don't bag you too.

Anonymous said...

Yeah, paypal is a den of fettid, sheit-eating serpents who deserve a hard boot stomped down on their necks. From the holier-than-thou representative who took it upon himself to freeze a charitable toy drive to the supervisors and managers that allowed this to happen. That "representative" didn't need to be reprimanded, he needed to be taken out to the back parking lot and have the the living sheit beaten out of him.

http://tinyurl.com/77uhjgg

As a corporation, they are as soul-less, heartless and blood-less
as any zombie created for The Walking Dead. My worst fear is that they are going to do the same thing they did to Regretsy. The problem here of course is that Ken could pass the point of no return by the time paypal "realizes" their mistake and releases the funds.

God help them if that happens. The Linux communities outcry will dwarf the one from Regretsy readers by far.

God bless you Ken Starks and the work you have done, and I am sure the work you will continue to do.

Fight like hell and know that thousands cheer you on

Unknown said...

"Donations to this fund are not tax deductible for federal income tax purposes"

This has been added to all applicable donation links. Thank you for the heads-up.

And Yeah, paypal sucks. Truly they do.

Uncle Foo said...

I left a donation and I really hope you can get the help you need. However as a Canadian I can't understand we the American people allow such a barbaric situation to exist. Health care is a basic human right. The entire world understands this but somehow America just doesn't get it.
Where are the riots? How can this be allowed to continue?

Anonymous said...

I will drop off a donation as well.
Just a quick reply to Uncle Foo about where the "riots" are for allowing "barbaric" situations like this to exist. As a foreigner living here, i can tell you that in the US, generally speaking, if it is not in the US Constitution, then it is not considered a right. It is a luxury, or something you need to carry your own financial and moral responsibility for. Health included. I am not saying that I agree with it, far from it. Like this case, like many thousands desperate cases, illnesses like cancer, diabetes, can wipe out anyone's savings in a matter of days. And then people die. However, it must be that Americans are fine with it, or there would be a push for a renewal of this broken system. And, BTW, Obamacare is not the answer either. It's a beginning, but not the solution.
There is no easy answer. Americans are told countless times sound bites like "The wealthiest nation on Earth" and that any suggestion like universal health coverage, like 95% of civilized countries have, at half the cost, practically equals to Communism , at this point the debate ends abruptly. I gave up years ago. There is no point to it. Peace out.

Anonymous said...

I left a small donation, as an European I concur with the Canadian post above ... Glyn Moody tweeted and sent me here, haven't been here for a too long time. Good wishes!

Grigor Gatchev said...

Reflected in my humble blog, and I will seek a way to donate money from here.

Anonymous said...

Posted this on G+, FB and Twitter. All I can do to help atm. Will donate when I get my money.

Anonymous said...

Best thing to do is get the op done in Mexico cheap. Can probably do it for the amount you've collected already. Medical tourism is the way to go when you're short of funds to pay for care in the USA.

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Anonymous said...

I'm afraid I can't donate, but I wanted to provide a link to the Obamacare Pre-Existing Conditions Plan, which might help you: https://www.pcip.gov/

Anonymous said...

I was diagnosed with colon cancer last Friday. I am fortunate that I have insurance. Donation made.

Anonymous said...

Posted on Hacker News and it instantly got the homepage. If anyone has an account there go upvote. Quite a lot traffic might come for there.
http://news.ycombinator.com/

http://news.ycombinator.com/item?id=4430020

Onur YALAZI said...

Hello, I think, US health care is really screwed up. Even 50K$ for operations room? You may consider health tourism. I believe you may have first world quality operation and after care in Turkey here for 50k. Would you consider this?

Keith Posehn said...

I'm really sorry to hear this - Cancer is a terrible thing, and my Grandfather (one of the greatest inspirations in my life) just barely escaped it.

Do you want another site to help host donations? Give me an email at keith [at] appzorz [dot] com - we just made a platform for this sort of thing and if we can help let me know. Also going to donate via PayPal anyway.

Keith Posehn said...

Didn't see that there is an IndieGoGo campaign, never mind. Glad one is set up :)

Anonymous said...

Do you have a bank account where I can transfer money to using SWIFT? I would like to donate, but don't have a credit card or paypal.

Jordi said...

How is it possible that in the first world this can happen? In my country we have social care everyone, with radiotherapy and everything. My father for example got the surgery, hospital, chimiotherapy, and now the doctor revisions, TACs and everything, for free (well he paid the taxes when he wasnt't retired of course, he worked as a cooker). And the public care has much money so better equipment andbetter doctors (very difficult to enter). I hope eith the crisis everything continues like this.

Jordi said...

Bedt wishes, everything will be fine

Anonymous said...

Summary.
Do not have surgery in the USA. Go to japan or Germany where the use laser scalpels. US surgeons reluctant to use modern tech owing to the risk of lawsuits.
Shop symptoms to alt clinics. Issels and Gersons are good.
Watch video (YouTube) Dieing to have known.
USA 25yrs behind other countries in treating cancer.
Important. Cancer is a symptom not the cause. If you get the symptom removed, u still have to fix the underlying cause. Many docs in USA don't understand this as it often involves nutrition which they know little about.

Anonymous said...

IMPORTANT REQUEST - start a non-profit
foundation for OPEN SOURCE contributors.
This is NOT a personal plea for 'save a life.'
THIS IS the CONTINUANCE OF OPEN SOURCE
thoughout time immortal!

fair disclosure: I am not completely sick, but
older and I CONTRIBUTE because it is
one of the most effective ways to save humanity
long term.

Remember, doctors have doctor organizations
and even non-profit clergy have religious organization to help them.
THE INDIVIDUAL PROGRAMMER is ISOLATED.

Even simple items like a SUMMARY of
alternative views on www.patientslikeme.com
is helpful.

If you are TRANSPARENT with an INDEPENDENT audit, then use the excess
money (if there is any) for the NEW FOUNDATION. Remember, that it is easy
to underestimate the FINANCIAL CHARGES
of the USA Health Care System.

PS. one parent died of cancer. I kept some notes. One doctor claims 9 visits, but I only have 8 visits. Adjusted, with no plea of
guilty, explanation. Few communications with
patient's family. This may be an exceptional
example, however it appears that the USA HEALTHCARE SYSTEM is badly BROKEN -
allegedly.
good luck and g-d bless.

PPS. it is possible that the FIRST THING
the MEDICAL SYSTEM DOES is to verify
your assets and credit check?? One effect
of the system is to produce BANKRUPTCY
and allegedly 'pain and suffering.'

sicksuffernonprofit@workoblue.33mail.com

Pedro said...

i was someone who donated back in 2012.. how's ken doing after these years?

Unknown said...

Pedro, thank you. I am doing well. I did have to elect larynx removal to insure that the cancer did not return. After 3 years of remission, spots on my voice box began to show pre-cancerous activity. I chose to have my larynx removed and stop all the worry. But I sincerely thank you for your concern and for your support. I will be giving a "talk" at Texas Linux Fest this month in San Marcos. I'll post the video when it's done.