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Title: Get Involved--Please Post by Magman on Jul 24th, 2004, 6:41pm Fellow Cluster Sufferers & Supporters We need you now more than ever before. Please, speak up on the very important topics and questions before us. OUCH is our CH voice to the medical community and the world. It would be a shame to throw away the last 4+ years of toil and sweat. I feel we can turn this around, but it will take time and cooperation. Please, post your thoughts and ideas so the leadership can provide a structure and vision we all can be proud of. If you have completely lost faith in OUCH as our voice, what do you feel are our options? I can tell you from experience, we need the focus, functions, and advocacy of a not for profit organization if we are to be heard by those not involved, or not listening, in our world of CH. IMHO……….. No mater what ‘organization’ is our public ‘voice’, it must be run as a business. This means a BoD separate and detached from the membership. This BoD should be comprised of outside business persons and/or professionals within the industries we deal with. They are there, to ensure that the Officers and other persons representing the Organization are conducting business as laid out in the Bylaws and Policies and Procedures. Officers, should be nominated and elected from the ranks of the general membership. The officers are tasked with carrying on the day to day affairs of the organization and keep membership informed. Business matters should be discussed by Officers, Committee Chairs, etc., in a business environment…….you would not have a meeting of Officers at the local StarB*cks for the world to hear…our organization should function no differently. Once decisions are made, they are disseminated to the general membership. Members have a voice, and in certain areas or topics, a vote by the General Membership may be required. This can easily be accomplished on the current OUCH site as it has in the past. Peace, -dan |
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Title: Re: Get Involved--Please Post by Jonny on Jul 24th, 2004, 6:55pm I aint lost faith, I just think you should keep your fucking mouth shut when it comes to other members....Think it all you want, just keep your mouth shut in public (And name calling?....Please!)....otherwise take it to their face in private! Opps, did I spell all that right? ;;D ........................................jonny |
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Title: Re: Get Involved--Please Post by Jeepgun on Jul 24th, 2004, 7:19pm If OUCH is going to be run by outside individuals, fine. If it's going to be run by fellow cluster headache sufferers, fine. From what I've read on the OUCH board, there are two primary ingredients that are missing: Professionalism, and priority focus on the goals of the organization. (i.e. putting the needs and goals of the organization ahead of one's personal preferences and attachments) The name-calling, talking about other members behind their backs, people who refuse to be team players and want to strike off on their own direction or seize control for the sake of power, and the personal differences with other board members: All of this crap needs to stop. It doesn't matter how it stops, but it needs to cease immediately, or else OUCH is doomed. It may already be doomed. So much damage has already been done by certain individuals... The mission itself is clear cut. There are goals and by-laws in place. There is a willing and able membership. The way I see it, a president needs to be elected, and that president needs to have final say on decisions, accept ultimate responsibility, and keep the board of directors working as a team towards the goals that have been set. In turn, the BoD needs to support the mission, back whomever is filling the position of president, and leave all the petty personal bullshit behind when acting in the capacity of a board member. The only person that should speak for the organization is the president. The person ultimately in charge is the president. That's really the way it must be. Every ship must have a captain. Right now, our vessel looks like swiss cheese. My two-bits' worth... -Frank |
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Title: Re: Get Involved--Please Post by Redd715 on Jul 24th, 2004, 7:25pm Quote:
Agreed, but these individuals have to be required to have a full education into this condition, the plights faced with Physicians, Insurance companies I don't have to list each thing we all know that drill. I believe that this may be difficult to come by unless the persons have first hand experience. The Documentary may serve well as baptism by fire, but then a more formal education in this comes later,. There is so little anyone can convey without truely knowing the extent to which this condition effects the sufferers involved. Quote:
Again, this re-itterates the need of the BOD to be very well educated, and passionate to the plight. Personally, my opinion is if there are members of OUCH that are qualified to fill BOD positions all the more power to the Org. Half the battle of the empathy for the condition is already won. Not only can they represent the Org. in a business fashion, but the impact of adding the super and sub scripts... "...and I am a cluster sufferer..." without it turning into personal account would lend to the validation of our situation, and to our desired goals as a whole. IMHO of course. Pegg |
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Title: Re: Get Involved--Please Post by Jeepgun on Jul 24th, 2004, 9:32pm "Get involved, get involved, get involved..." In what? Explain some things that need to be done, what sort of involvement you're looking for, what tasks need doing, and then ask for people to help in specific ways, otherwise, you can have all the involvement in the world, but nothing's going to be accomplished. |
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Title: Re: Get Involved--Please Post by BarbaraD on Jul 24th, 2004, 11:56pm on 07/24/04 at 21:32:27, Jeepgun wrote:
Let me start off by saying this is ONLY my PERSONAL opinion and does not reflect that of anyone else on the BOD of OUCH: 1. We need brochures set up. We have a media committee, but they need help. We have an offer of free printing. This needs to be taken advantage of before it's recinded. Also generic articles available for local newspapers. I know I put an article in our local newspaper and got calls for weeks from CHers in our area. 2. Chapters need to be formed to help with local area contacts and research as well as local grants. 3. Grants need to be researched and found. We're eligible for a number of grants, but it takes the time to get them and someone who knows how. With grant money we can help fund more research, but we can't do this without funds. If we could donate (say) $50,000 to a clinic for CH research, I think we'd be taken a lot more serious as well as getting some return for the buck. 4. I've suggested a legislation committee to WATCH what's being done in DC and let the membership know. If there's something that e(a)ffects us (never can remember which one is which) then we need to be writing our Congressmen and Senators. Insurance legislation has a direct impact on each of us - but if we don't know about it -- too bad Charlie. 5. Liasions with other headache organizations. Maybe writers who can contribute to THEIR newsletters. NHS has had a couple of articles on CH, but not much. ACHE still believes in migraines and not much in CH. 6. Attorneys - nonprofit, trademark, copyright and a lot of other questions come up that need answers (and we do have some attorneys in our midst). There's a questionaire out somewhere that asks what special skills you have and what you'd be willing to do to help OUCH. I don't really know too much about this, but computer skills may be needed for this area. I guess to quote (sort of) John Kennedy: "Ask not what your country (OUCH) can do for you, but what you can do for OUCH." Then volunteer to do it. That's how OUCH got started - a few people put their particular skills to work and we got an organization formed. We put in a lot of long hours and hard work, but we had one goal in mind - getting rid of these headaches. Maybe we didn't run things according to Hoyle, but it really didn't matter who did what or who got credit or who liked who as long as it got done. To get involved - contact a board member and say, "I'm good at XYZ - put me to work!" Or if you have a brainstorming idea - put it on the Business Board. I can't speak for the whole board, but I know I check the board daily (sometimes more often) and I think the others do also. Anyhow, you asked and lo and behold, you got my opinion. :D |
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Title: Re: Get Involved--Please Post by brain_cramps on Jul 25th, 2004, 8:09am on 07/24/04 at 18:55:09, Jonny wrote:
Nope. Its 'oops', not 'opps'. ;;D grant :-X |
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Title: Re: Get Involved--Please Post by Jeepgun on Jul 25th, 2004, 10:45am Thank you, Barb! I live in a fairly small town, and I'm sure I could get the local newspaper to do a story. If someone will get me the format for brochures, I would be happy to put together information packets and hand them out to local doctors. I'm also a very good (and stubborn) communicator. I don't mind making phone calls and following things up. I would be happy to assist with writing and editing, as well. "C'mon, coach! Put me in the game! I'm dyin' over here!" :) Let's get it done! -Frank |
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Title: Re: Get Involved--Please Post by catlind on Jul 25th, 2004, 12:15pm Ken Olsen (Athos) the chair of the media committee was putting together a "How To" for contacting media outlets - Radio, TV, newspapers. His plan was to have it all laid out so that any member could use his behind the scenes wisdom to contact their local media and get media exposure on CH. I don't know where that's at, as I haven't been on the BoD since back in May, but things like that are wonderful areas for the membership to get involved. Get involved by going to OUCH, reading what's going on, and voicing your opinion. If you don't have the time to give a specific skill, then use what you have, your voice. This is the members organization, and if the members don't speak up about what they want, then the leadership is left guessing. And when the membership does speak up, it needs to be listened to and responded to with a full explanation of why something is being done this way or that. That's my opinion on some of the things regarding OUCH. Cat |
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Title: Re: Get Involved--Please Post by Samantha_Smith on Jul 25th, 2004, 2:56pm I agree with Barbara D. May I suggest that people look at the way The National Organization for the Reform of Marijuana Laws (NORML) is set up. I don't care if you agree with what NORML is doing or not, if you smoke weed or not--just look at how they are set up top to bottom. Go to www.norml.org. NORML has attorneys, local chapters, DC watch groups, they even have a PAC (political action committee) fund! |
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Title: Re: Get Involved--Please Post by CarrieBethRN on Jul 25th, 2004, 3:56pm I'd definately say that one of the models I've looked at closely as far as organizational structure is THON at Penn State. The Penn State IFC/Panhellenic Dance Marathon is the largest STUDENT run philanthropy in the WORLD. Every year I was at Penn State, we raised over $3 million to help support families with children with cancer at Hershey Med Center. Some of that money goes to research, but a lot goes to help these families get what they need. Granted, childhood cancer is a big ole issue that lots of people are aware of and willing to fight about, but the way that organization was run was absolutely amazing. http://www.thon.org I was also really into the Cystic Fibrosis Foundation for awhile because of the fact that my cousins have CF. In high school as a project for PA Governor's School for Health Care, I decided to run a fundraiser for the CFF. I wound up running the Great Strides Walk-a-Thon in my hometown for the first (and so far the last) time ever. We raised over $700 which doesn't sound like much, but it was still something. I had heard one child with CF say one time that he wished people cared about CF like people care about childhood cancer. It broke my heart. But they work and work and they get the money raised and the funds doled out. Been around a long time...since I was a kid. http://www.cff.org So it just takes persistence and people to give of their time wholeheartedly. That has been started with OUCH...it may take time before it grows to everyone's vision, but we can't give up on it. :) I've offered any abilities I have to OUCH for those who can use it. I'm at a major medical center as a student and patient. I plan to go into headache neurology as a nurse practitioner, and I will hopefully have that degree within a couple more years. I'm more than willing to help out with anything needed. Soo....keep fighting!! We used to have a motto for the CFF that said, "Help make CF stand for Cure Found." We need something like that too! ;) Hugz, Carrie :) |
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Title: Re: Get Involved--Please Post by BarbaraD on Jul 25th, 2004, 4:49pm Where's lcbob when we need him (He's the guy that came up with OUCH). He could always think of something. Here's a suggestion -- go to the OUCH board and scan the committees - Pick the one you can help on and put a post on it offering your services. If the chairman doesn't contact you -- post it on the BOD discussions. But PLEASE do get involved. OUCH needs everyone of us. Sorry Grant OOPS. Got it now - right [smiley=huh.gif] |
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Title: Re: Get Involved--Please Post by alleyoop on Jul 25th, 2004, 6:14pm on 07/24/04 at 19:25:41, Redd715 wrote:
Methinks beauty and brains do coexist! ..........................................................alley |
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Title: Re: Get Involved--Please Post by Donna H. on Jul 25th, 2004, 7:35pm OUCH already has a president, and his office is described in our bylaws. His functions are limited, as they should be. I think we need an Executive Officer....someone tough, fair and willing to shake the tree when apples start to go bad. Someone who knows OUCH well, knows the personalities around here and knows how to keep everyone focused on what they have agreed to do. Outsiders will never work in an organization such as ours. Another opinion of mine is, when we were conducting business according to Roberts Rules of Order, there was less confusion. These rules have been used to govern many organizations for many years because they are effective. We've deviated a little in order to pare down our bylaws, as some members insisted was the right thing to do. OUCH is changing and one of the reasons is because we are growing. It's not just a handful of people anymore. 1400 may not be a big number, but the bigger we get, the more conflicting opinions we will have to integrate. Our biggest problem right now is that a couple of people want more control than is allowable or wise. I've heard that if you want to climb the corporate ladder, you will eventually have to step on some people to get up there. I don't like that theory. I think you should climb because you're what the people want up there. This is the kind of thread that needs to be seen on the OUCH board too. We (the members) are talking things over and it's good! |
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Title: Re: Get Involved--Please Post by Jeepgun on Jul 25th, 2004, 7:55pm I couldn't agree with you more, Donna. Nice post. :) |
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