Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group T minus 92 days and counting

Hi Paul,

Yes, that is one of the major problems with the SSN system is that it rewards not working and punishs working. A lot of energy of the group is going to be to try and wither get that changed, or get an execption put through congress. This is probably going to require creating a small sister group to Power over Pain that is completly focused on the political aspects. In the mean time, we are going to have varius types of jobs available, from on call staff for misc. projects that come on, to part time staff preforming all types of jobs, as well as full time staff. Not everyone employeed is going to be on SSN, but a lot are and we are welcoming them with open arms and hoping that we can offer them a better way of life than they have now. At present, we are going to work as best we can within SSN's guidelines, but we will hopefully get some things changed and be better able to increase the quality of life of those who are severely affected by chronic painfull diseases.



Take care my friend

Daniel

Keep on keepin on Kicking some AS

Hi Penny,

I am actually hoping to get the PA branch started very early on (within the first 4 states).

There are three missions of the group.

1) 50% of our money and effort will be to provide employment to people with chronic painfull conditions, who usually cannot work regular jobs, thus manytimes go on SSN, even though they can work sometimes, and not at others. SSN is also set up to punish you if you go out to work, you lose your coverage, then when you go into the hospital for two months, you are fired, and you have to start the application process all over again. Untill we can get changes in SSN regulations, we may use some more ingenuitive approaches to compensation. (Don't worry, nothing illegal). Also, not all of out employees will be on SSN, ideally they will all have chronic painfull desieases.There will be a list of employees available to do (appropriate, not construction work or anything) jobs, like they do with substitute teachers. If we have a pool of 100 employees and IBM calls up and need 10 people to do data entry, we'll probably have 10 feeling up to it out of the hundred.

2) 25% of the focus is on research. Giving grants and such.

3) 25% is focusing on education. Educating the public, patients, doctors, etc. Also giving scholarships to students going into fields that benifit sufferers of these desieses, and to people with painfull desaeses. Also funds for retraining if you are disabled from your job but could work another.

That's a short overview. I hope that this sounds like something that you might be interested in doing.

Talk to you soon,

Your friend, Daniel



Take care my friend

Daniel

Keep on keepin on Kicking some AS

That's great! Sounds like you have the momentum going. This might be a good avenue for actually getting some laws changed. If you can get a lot of media interest & exposure regarding the social security issue, that's what Congress responds to. Like the name POP--also makes me think of all the pills we have to pop.


This bunny Kicks AS !

Hadn't thought of that meaning of POP. Good one.



Take care my friend

Daniel

Keep on keepin on Kicking some AS

Got the logo! Lookin' good!

Great Leigh,

I actually found a site with all of the state flags, so as new branches open up, all we'll have to do is cut and paste. I'm so glad that you got the logs, I thought it was going to be way to big of a file.



Take care my friend

Daniel

Keep on keepin on Kicking some AS

No, I gave you my pop3 e-mail so size shouldn't be a problem there.

I was wondering though: Where is everybody? I sent pm's to Buggie and Glen but still no response?

I was wondering that myself. Perhaps just busy at the moment. Abe (Board of Directors) should be signing on soon, Lisa is rather busy right now, so I'll talk to her about it again after things ease up, other than that, I'm not sure.

****Just in-case anyone missed this post the first time or is new, everyone on the site is welsome to join Power over Pain, as a member/volunteer, a voting member, or even a full or part time employee with very good benefits.****

Feel free to PM me with any questions, comments, or a simply a note that you would like to help out.



Take care my friend

Daniel

Keep on keepin on Kicking some AS

Talk about overjudging the ammount of time to start this non-profit corporation, I am finishing up the Articles of Incorporation and will be sending them to the Secretary of State early next week. Without any major problems, Power Over Pain, Inc. Will be up and running as an official non-profit with-in a few weeks.

This has been accomplished because of the wonderfull dedication and hard work of the current members that are now on board. I would like to send kudos and a special pat on the back to Frankie (X-roach) and Leigh (Shalinara. They both have been invaluable. There are also many others who have offered support of the kind that will be needed later, and I would like to thank everyone who has offered assistance of any kind to KA.

We're on our way, ladies and gentlemen, and now it is time to show the world what People with AS, RA, OA, Sickle-cell anemia, Fibromaliga, Lupis, and Chronic Migrains can do when they get together to change a little part of the world, and improve the lives for everyone suffering from these diseases.



Take care my friend

Daniel

Keep on keepin on Kicking some AS