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Suggestions for OUCH (Read 6020 times)
deltadarlin
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Suggestions for OUCH
Jul 8th, 2009 at 9:26am
 
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.
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seaworthy
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Re: Suggestions for OUCH
Reply #1 - Jul 8th, 2009 at 11:29am
 
1. Open a moderated MB and fix the log in problem.
2. Disband all the ineffective committees.
3. Focus on limited, small, projects.
4. Independant audit and open the books, disclose where the auction money and all other monies have gone.
5. Hold the president accountable for visibility and leadership.
6 Release inactive BoD members from their duties.
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« Last Edit: Jul 8th, 2009 at 11:30am by seaworthy »  
 
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Re: Suggestions for OUCH
Reply #2 - Jul 8th, 2009 at 11:49am
 
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
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Re: Suggestions for OUCH
Reply #3 - Jul 8th, 2009 at 12:20pm
 
Seaworthy.........if OUCH continues I think that would be an excellent way to start over. I like your ideas.
Especially #4. I heard a few years ago, that was a problem, not so much now.
Jim
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Re: Suggestions for OUCH
Reply #4 - Jul 8th, 2009 at 12:28pm
 
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.
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Re: Suggestions for OUCH
Reply #5 - Jul 8th, 2009 at 2:09pm
 
I think Don has some great ideas.

Committee reports should be posted monthly to let everyone know what IS being done and give them a place to post some feedback.

I've seen more excitment shown in the last few days than I have in the past several years. The MEMBERS are speaking out. That's what's been missing...
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Re: Suggestions for OUCH
Reply #6 - Jul 8th, 2009 at 2:53pm
 
Eliminate the "code of silence" doctrine that applies to the BoD.
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deltadarlin
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Re: Suggestions for OUCH
Reply #7 - Jul 8th, 2009 at 3:36pm
 
seaworthy wrote on Jul 8th, 2009 at 2:53pm:
Eliminate the "code of silence" doctrine that applies to the BoD.


Are you talking about the non-disclosure agreement that the BoD signs?


While monthly committe reports may be a good thing to have, keep in mind, this is an all volunteer organization and the amount of time *volunteered* is going to vary.  Committees may not have anything new to report on a monthly basis.  I would suggest *official* quarterly reports with updates posted as they happen.

I am not aware of the state of the books with OUCH, past or present but, be aware, if for any reason, at any time, if something is not up to snuff (and I'm not even alluding to any wrong doing, just possible sloppy bookkeeping), an audit could sink OUCH, just as surely as anything could.  There could be difficulties with an audit where you've had multiple treasurers over a period of years.  Excactly where would be audit take place, given that the physical address for OUCH is Roundrock TX and to my knowledge, the treasurer is not based there?  Would the current treasurer be responsible for any irregularities found that he might not have any knowledge of?  I'm not sure an audit is needed or is feasible, not unless someone has information that would indicate wrongdoing.

Open the books yes, there should be a written accounting of all monies brought in and all monies spent.  There should be quarterly reports regarding funds.  There should be a paper trail of everything.

This is the beginning.  Involvement by the member is critical to this organization continuing in its efforts to meet its own vision statement.

I'll use an ancient African quote here, "It takes a village to raise a child".  Well OUCH is the child and the members make up the village.  It makes no difference if you are a sufferer or a supporter, you should have a vested interest in OUCH to see that it becomes the best it can be and that won't happen if people don't support the concept.
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Re: Suggestions for OUCH
Reply #8 - Jul 8th, 2009 at 5:05pm
 
Quote:
Are you talking about the non-disclosure agreement that the BoD signs?


If thats what it is called then yes. I've had my fill of politically correct responses.
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Re: Suggestions for OUCH
Reply #9 - Jul 8th, 2009 at 6:55pm
 
Carolyn, Federal Law requires that ALL records of a nonprofit corp be kept in the corporate office and are PUBLIC record available at any reasonal time. That includes all financial records, list of members, minutes, etc. Also the public may request copies of these records (a copy fee can be charged - the IRS has a fee set for this).

And yes, an audit should be done every time the Treasurer is changed. I requested that an audit be done when I resigned, but it was not done. I had an "unofficial" one done before I turned over the books by a CPA, but he wasn't a certified auditor. This is not casting any doubt on the Treasurer, but actually protects the Treasuer should anything arise after his/her term is over. It's a practice that's used in most companies - profit and nonprofit.

And a little known fact -- should an IRS audit occur -the Treasurer can be held personally liable as well as the organization.
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Re: Suggestions for OUCH
Reply #10 - Jul 8th, 2009 at 7:17pm
 
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.





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seaworthy
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Re: Suggestions for OUCH
Reply #11 - Jul 8th, 2009 at 7:50pm
 
I thought this was a suggestion thread.
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Re: Suggestions for OUCH
Reply #12 - Jul 8th, 2009 at 7:57pm
 
it is, and your suggestions are duly noted.
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seaworthy
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Re: Suggestions for OUCH
Reply #13 - Jul 8th, 2009 at 8:04pm
 
Heres another one that  aligns with:

Quote:
You want to make things better and see OUCH continue, then bloody well get involved in it instead of bitching.


When someone does volunteer then OUCH should be promptly responding to the offer one way or another. Even it's only initially a computer generated acknowledgement.

(Modified again because I have to start using the preview button)

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deltadarlin
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Re: Suggestions for OUCH
Reply #14 - Jul 8th, 2009 at 8:11pm
 
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.).
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Re: Suggestions for OUCH
Reply #15 - Jul 8th, 2009 at 8:27pm
 
BarbaraD wrote on Jul 8th, 2009 at 6:55pm:
And a little known fact -- should an IRS audit occur -the Treasurer can be held personally liable as well as the organization.

That right there is enough to keep most people away from that job. Especially since the pay is zilch.
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Re: Suggestions for OUCH
Reply #16 - Jul 8th, 2009 at 8:33pm
 
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)
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Re: Suggestions for OUCH
Reply #17 - Jul 8th, 2009 at 8:38pm
 
seaworthy wrote on Jul 8th, 2009 at 8:33pm:
(NOT modified because I finally used the preview button)

You get a gold star. Wink
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Re: Suggestions for OUCH
Reply #18 - Jul 8th, 2009 at 10:00pm
 
it's pretty easy to see where this is going...it's always been this way.
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Re: Suggestions for OUCH
Reply #19 - Jul 8th, 2009 at 10:03pm
 
deltadarlin wrote on Jul 8th, 2009 at 3:36pm:
While monthly committe reports may be a good thing to have, keep in mind, this is an all volunteer organization and the amount of time *volunteered* is going to vary.  Committees may not have anything new to report on a monthly basis.  I would suggest *official* quarterly reports with updates posted as they happen.


I volunteered on the BOD of a 501(C)3 non-profit organization for 7 years. There is no excuse for not having monthly committee reports printed in the minutes of any meeting.  Even if there is "nothing to report" or "no progress in our area," the fact that the committee heads attended the meeting (or had someone report for them in their absence) was conveyed to the membership on a monthly basis.

Transparency is key to a functional non-profit - because even if the BOD is volunteer based, the membership will revolt if they feel there is information being withheld.

I think that is all that is requested by some here.
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Re: Suggestions for OUCH
Reply #20 - Jul 8th, 2009 at 10:04pm
 
Not4Hire wrote on Jul 8th, 2009 at 10:00pm:
it's pretty easy to see where this is going...it's always been this way.

Care to explain? Is there no room for a little comic relief from time to time?
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Re: Suggestions for OUCH
Reply #21 - Jul 8th, 2009 at 10:13pm
 
Quote:
it's pretty easy to see where this is going


Hopefully its going into the ears of those at OUCH that can implement the discussions and changes need to save the organization.

(Preview again...now I want a gold star and 6/12 pounds of spare ribs. Predisone taper dontcha know.)
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Re: Suggestions for OUCH
Reply #22 - Jul 8th, 2009 at 10:17pm
 
seaworthy wrote on Jul 8th, 2009 at 10:13pm:
Quote:
it's pretty easy to see where this is going


Hopefully its going into the ears of those at OUCH that can implement the discussions and changes need to save the organization.

(Preview again...now I want a gold star and 6/12 pounds of spare ribs. Predisone taper dontcha know.)


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...)  Cool
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Re: Suggestions for OUCH
Reply #23 - Jul 8th, 2009 at 10:18pm
 
Pat.......the Board meets every quarter and they post the meetings on the OUCH board. Of course, if you can't get into the OUCH website then that isn't going to help much and hopefully that is one thing that can be corrected.

Just wanted you to know that they do not meet but every quarter and they do post the meetings for OUCH members to see. Smiley
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Re: Suggestions for OUCH
Reply #24 - Jul 9th, 2009 at 8:05am
 
Quote:
WE are OUCH


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