The HeliOS Project is now.....

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

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Tuesday, March 27, 2012

HeliOS - A Report to the Community

I was not happy at first.

Fact is, I felt a flush of anger when I resumed my online presence and found that Diane had posted on my blog.  When I asked her to monitor comments and watch for potty mouth stuff the filters let by, I didn't expect her to post from my platform.

Fortunately, if I have learned anything from my life-mistakes, it is to fire up the brain before allowing the tongue to engage.

And I am glad I did.  She only did what she thought she needed to do....because she knew it was something I would not do.  Because she did, my friends have bought me an entire month where I do not have to worry.

I mean it literally bought me a month.  I cannot express to you enough how much of a relief that is.  Thank you.

I may not get a chance in the near future to contact you personally but in time I will.  You have humbled me to tears.

My radiation treatments have affected my inner ear and eye sight to the point where I cannot sit at any device with a back light without becoming terribly dizzy and ill.  We're not sure why so we are trying different filtering lenses to see if I can't get around this. 

I really need to get back to work. 

As of now, just a pair of extremely dark lenses are doing the trick for 10 minutes at a time.  I am talking welder's goggles levels of dark.

I want to spend a few minutes telling you where we are as an organization and where I am personally.  The radiation has decreased my voice to a croaking whisper and the pain has to be managed by morphine so from a comfort standpoint, I've been in better places.  I am unable to take phone calls so if I do not answer your voicemail, please understand.....

I just can't.

My prognosis is still guardedly optimistic.  I am just about half way through my treatments and the pain is largely from the tissue being cooked.  Unfortunately, I am hobbled with a tracheotomy to accommodate my breathing because the radiation swells the tissue of my throat.  I don't mean "hobbled" but for any other reason except I don't feel comfortable around children.

"Honey, this nice man with a plastic pipe sticking out of his neck is here to give you a computer.  Isn't that special?"

In the mean time, the kid's eyes get the size of half dollars and I can almost physically feel the discomfort in the room.

I won't be doing any more installs while ventilated.  That's just the way it's going to be.  Hopefully we can find a couple of volunteers to get them done.

As well, we are attempting to move out from under the SPI umbrella and gain our own non profit status.  Logistically, we need to be able to gain access to our funds in real time.  The way it is now, I have to pay for what we need then scan the receipts, send them to SPI and wait for them to respond with a check.  The turn around is now over two weeks and that just isn't working for us any more.

My personal thanks to Carolyn Smith and Marge Tripp for handling this for us. As soon as we have the new bylaws finished, we will be moving ahead with the application process.  Instead of forming a new 501(c)(3), we will be taking over an existing non profit (REGLUE) that isn't being used anymore.  My thanks to Don Davis for helping us with this.  That way, it saves us a ton of money in filing fees and speeds up the process.

We will also be bringing on a total of 9 directors onto the HeliOS board.  As it stands now, HeliOS is a Texas non profit with a board of directors that spans across the US.  The newly-formed HeliOS 501(c)(3) will call for directors to be from the immediate area.  I have already emailed several prominent HeliOS volunteers and let them know that we will be holding elections for directors toward the end of April.  Hopefully a local newspaper article next week will fill in the blanks for needed directors.

So there is that.

That pretty much catches you up on what is going on at HeliOS.  Again I want to thank those who have given me a rest from worry for the next month or so.  I can now concentrate on getting back to work and stabilizing HeliOS.

For all the "guarded optimism", we are still dealing with cancer.  No one really knows how this will end but regardless, I will be working to insure that HeliOS can survive without one individual being present.

All Righty Then


eMBee said...

as i suggested in the previous entry, would an OLPC XO help with the backlight issue? the XO can turn the backlight off. for the rest it is a full linux system. if there is noone nearby who can lend or donate a machine, i'll ask the beijing linux user group. they have a bunch of XO 1.0 devices given to them to be used for a good cause. the XO 1.0 is not the fastest machine, but for reading and writing email it works just fine. i am running claws-mail and firefox on it without trouble. (just don't open to many tabs :-) if the keyboard is to small you can always hook up any USB keyboard for more convenient typing.

greetings, eMBee.

Andrew Cater said...

Thanks for the update, Ken. Stay well

NoobixCube said...

Because they don't have backlights, you could try picking up a tablet with a Mirasol or e-Ink display. They're a little pricey, around the US$300 mark, but the screen technologies are entirely reflective. It's hardly a great solution, or a comfort, but it's a suggestion to get around your current eyesight difficulties. I find in any adversity, overcoming the individual pieces can sometimes help your outlook a lot. Not that I've ever been in such a bad way before, but I hope the principle still scales...

Anonymous said...

Ken, listen. I know you have every expectation of beating this thing, and so do I. but if, God forbid, things go wrong, well, what is it you want to do. I mean, I know that sounds morbid but just think about it and let me know. I love you man..."

Gil said...

Ken, the slow reply is understandable. It's nothing. I feel like a!(!&*$<>#>? being utterly clueless as to your health.
You are in my prayers for your health, but also for wisdom to continue with those things about which you are passionate.
It is because of your passion and the direction towards obtaining your nonprofit status that I would like to talk with your trusted friends at Helios. Peace and love be with you. Take care, my friend.