The other thread is far too long and cumbersome now.  Since numerous members won't be able to attend the meeting, why not start here and now and people offer up suggestions to keep OUCH up and running?

I've read the posts and talked to people about changes they would like to see.  I'll start with a few.  Please post what you think needs to be done and/or comment on the changes.

The vison statement for OUCH

Vision Statement
O.U.C.H. will be the most comprehensive resource in the World
for cluster headache sufferers.
We will eliminate misinformation among cluster headache sufferers,
families of sufferers, coworkers of sufferers and the medical
community by providing the most up to date information
on treatments.
We will strive to be a catalyst for finding a cure for cluster headaches
by encouraging and participating in research into the condition.

Changes that have been suggested:

1.  Dues.  Members in OUCH would begin paying dues.  The don't have to be much.  *X* amount per person, or *XX* amount for the family.

2.  Only registered~aka~paying members would be allowed to vote on issues regarding the running of the organization.

3.  Bring back the message board on the OUCH website, BUT, make it private so that members only could participate (affiliates, such as Linde would not have access to this board).
    (a)  The board would be moderated and the standards of conduct
    would be along the same lines that DJ instituted here.

4.  Do away with term limits for the officers.  If you have someone that is really good and is doing a wonderful job, why limit them to a specified term if they are willing to stay on in that capacity?  If the officer is not good, then they can be removed.

5.  Set short-term and long-term goals, ie, 1 year, 3 years, 5 years.  Sometimes the *big* picture gets to be overwhelming and you lose the details.

Always remember, it's easy to criticize something, but it's much harder to actually to be active and be a catalyst to the changes you want to see.  In other words, be a part of the solution, not the problem.

I think that is an excellent start. 

I would be more than happy to pay dues for membership.  If that is done the current membership would need to be notified somehow and a time allowed for it to take place before the rolls were purged.  I know there are a lot who have not been active in any way for a long time. 

Correcting the log-in problem is key to a lot of it also.  Those of us who have not been able to get access feel out of the loop, causing perceptions of inactivity that are untrue. 

Prior to this point I have not had the time nor the resources to participate at the level I would like to do, but hopefully will be able to rectify that.  When particular help is needed for a specific project notice to the membership as a whole would probably help generate the volunteers more readily.

Jerry

I have to admit I have not really taken the time to learn the OUCH website. But is there a place that lists all the active projects, and contact people? Is there a position of "Volunteer Coordinator"? If not, perhaps that position could be the one that sends out requests for help with specific projects, and maintains the database of who has what skills/interests/talents or otherwise willing to help with certain things. I know there is nothing worse that volunteering to help but then not being called upon.

I agree with what others have said on this thread and the other one, perhaps slow down the scope of what OUCH is trying to accomplish right now, and focus more on education and information resource to cluster headache sufferers. Continue to gather information using the survey so that Linde or whoever comes in behind them can use the data to help with the overall goal of determining what causes CH so that a cure can be found.

I would pay dues and think the concept of "family dues" is appropriate to keep supporters informed. I would also hope that no dues would be required for those intially seeking information. But access to message boards etc could require dues.

Eliminate the "code of silence" doctrine that applies to the BoD.

Quote:


If thats what it is called then yes. I've had my fill of politically correct responses.

The OUCH quarterly Financial reports, with the exception of the last, which will be up shortly, have been available for any member to read since Jim took the office of Treasurer a WHOLE year ago.  He also went back throught the books, audited them and posted corrected 2007 and 2008 financial reports.  According to the hits,  not many bother to read them. 

I would suggest that anyone who has a comment truly read what a non-profit is.  What it is allowed to do in order to keep it's status and what it is not allowed to do.  An OUCH attorney is VERY much a necessity  and we have a very good one willing to work with us for a very small fee.  She was at the convention in dallas along with her husband who is also an attorney.   Many of you met them.

While there have been many who tried to get re-registered and didn't get any satisfaction, and of that I am certain as well as sorry, when I and others on OUCH asked for a back-up person for the OUCH web-site we recieved no one who was willing to help. We asked a lot of folks.

Paul Logue on the nominating com. as well as BoD, asked many many many here if they would be interested in running for the BOD,   not to mention Helen has been the VP and Volunteer Coordination, who also has been asking for people to be on the BoD or a committee or to do a task... Only one responded and I do not even know her,  even though I've been here 11 yrs. now.  Her name is Sue.  With only ONE single response I guess that is why I sit here shaking my head in dis-belief, as everyone who answered Chuck's thread and now this one.   

You want to make things better and see OUCH continue, then bloody well get involved in it instead of bitching.  We have a grand total of a few  hard-working people trying to run OUCH with no help.  have we missed the mark on some things?   Of course.  NO one is denying that.


Please folks take the time to educate yourself on non-profits as well as considering being a part of the solution you all seem to want.   

I WANT this and that... doesn't cut it. 

To say 'cut committees' if they are not working,  Well we did that twice in the past 4 years, partially because they were not working and partially because no one to fill them.

Virtually everything you folks have suggested has been attemped in the last several years.  With no result because:

We don't have enough people to carry it out.  Every single attemp to recruit, has failed because for the most part,  everyone wants:  get ready for it....


SOMEONE ELSE TO DO IT!!!!!!!


THAT is what this meeting in St. Lois is going to be all about.

it is, and your suggestions are duly noted.

LInda,
Don't take offense.  It looks to me like people are getting involved or at least trying to.  Maybe the vehicle isn't the correct one, but it has to start somewhere.  At least people are beginning to take an interest in OUCH.  Suggestions are being made and questions asked and that is how involvement begins.

Linda is correct when she says that the past financial reports are up, although not the first quarter of 2009.  

Access is a different story and it doesn't make a difference as to why access was nto gained(I'm NOT blaming anyone here, so don't even go there), people tend to feel like they are being left out of the process.  I would ask this, though, for those of you who could not access the board, did you try to contact someone through another venue (Gator and I talked via ch.com)?

As to audits, I would probably bow to the attorney's expertise on this.  There is nothing in the Federal tax code that requires a tax-exempt entity to have audits (The IRS has no requirements for nonprofits to have their own audits. The IRS audits some nonprofits but there is no schedule.).

Just to clarify my last suggestion.

Gator has always responded promptly and with helpfull info for access issues I've had in the past if I contacted him directly.

My "response" suggestion is born from my offering my services to a commitee and getting NO response what so ever.

(NOT modified because I finally used the preview button)

it's pretty easy to see where this is going...it's always been this way.

Not4Hire wrote on Jul 8^th, 2009 at 10:00pm:

Care to explain? Is there no room for a little comic relief from time to time?

seaworthy wrote on Jul 8^th, 2009 at 10:13pm:


amen, don. WE are OUCH, there is no ...them.

modified to say: (ok, you said 'those"...)

(and we know the fuckin yacht is at the bottom of the harbor...) 

Quote:


Thats debatable but this a suggestion thread, not a debate thread.