Guest guest Posted June 5, 2011 Report Share Posted June 5, 2011 Bob, the board and membership I am going to answear what I can here but some I must refuse to answear puplicaly or at all just as the board has done and will do.  I apolagise to all the genural members for this but please understand and trust me it is not from lack of the info but it is from knowing. This is the same as the Board can not reviel every little thing they do or know as will be shown in there responces also.   My answear will fallow the questins and will be in " " marks.  you will also find that were I am wrong I let it be known and I egknowlage that fact and were I belive there needs to be more detail I state that. I will be as honest as I have been and can be with the facts I know and can openly speak on.   The  Redneck  Marty G      To: stillsdisease Sent: Saturday, June 4, 2011 6:55 AM Subject: ** ALL READ ** ANSWERS FROM THE BOARD OF DIRECTORS *************  I would like to say as a member of the support group and the Vice President of the International Still's Disease Foundation, Inc. that I and others; as officers of this foundation and moderators of the support group, function as a whole. We support the rules and regulations, we govern the foundation, and the group for good reasons. We do not have these rules and guidelines in place to be mean, petty or unkind, they come from experience and a necessity to run the foundation and group for the betterment of all. We are as you, family, and a family that works endless hours at times with love and support for hundreds we often don't even know. We do many things that others aren't aware of and we do it because we love this foundation, the people, and what you mean in our lives. We, the board of directors, stand together through trials, illness and mistakes in hopes of doing our best to help others.  " I am glad to see you admite that yes the board dose make mistakes so at lest now we have some comen grond to work with besides the working even when ill to help others that we do not even know all because we have empathy for them and know what it is like to feel alone with this thing called stills ! " Marty, in answer to your second email we, the Board of the International Still's Foundation, Inc., takes some time in regards to matters of business with Board members that are in many states and another country. Some work and all have Still's and/or other health issues. We do not fire back answers to such serious allegations without due consideration of the facts and majority votes from our Board of directors and this takes time. " I know it takes time for all things but some were easyer then others and I was feeling that some could have been answeard sooner instead of all at once but how they were answeard was also up to you and that is why the 5 days as that is a normal amount of time given . " There have been predators that have come to our group in the past wishing to exploit our members' information without permission or without proper credentials. Sometimes we have to protect others' interests and due to legal concerns this is, at times, without sharing all the information with the support group members. I, aka , would like to have it known that I will stand behind any decisions I have ever made to protect this foundation and it's support group members at any time. I know that I have the support of my fellow board members as they do mine. " Yes there has been that kind of person more then once here and I know that but I belive also some have been mistakenly put into this group wrongly with out getting  the whole picture. I will not go into detail any more on this subject. there is one board member that has if not slanderd members here has at lest spread negitive gosip about them! I have recived some of these  emails personaly and have recived others from member(s) that prove this! I will not name this Board member puplicaly but I know the rest of the board has an idea who it is or should by now. I also know that actions such as this DO NOT SUPORT OR INPROVE THIS FOUDATION IN THE LEST AND ANY BOARD MEMEBER DOING SUCH ACTS SHOULD BE REMOVED! I also know we as the genrle membership have no vote or say in it but must trust the board to do the right thing by the foudation and the membership. in this case at lest it is also a known fact that at lest one of the emails was sent not only  to my self but also to one other board member by the board member doing these acts. So the Board member is  known by at lest one  other board member and they also have at lest one of the same e mails I do. " The following is a collaboration written by Bob Himes, Secretary/Treasurer, Kathleen Brown, Nursing Director and Boerner, aka , Vice President, and so voted by majority. Marty I, Bob Himes, am going to try to answer your e-mail as best I can and incorporate it into Patty and Kathleen's answers. I don't want this to be confrontational. I just want it to be answering your questions as best we can since the Foundation is a non-profit, non paying membership Corporation.  " Fist off I thank you for taking the time to respond as I know it is both not easy nor is it pleasent "  First of all as Patty said the Board has only banned one person; except for spammers, from this group, forum, list whatever you want to call it? This person was banned as he was using our group to spout Political and Religious garbage about the United States. Prior to being banned; he was asked to not use our group to antagonize the membership as a whole with his personal agendas. This was causing a breakdown of our group. " I knew this and as a matter of fact I was one that encougeged this to take place and suported the boad fully in this action "  And to answer another question further; " NO " Hayduke has not been banned, and whoever said that he was does not have their facts straight. One of our rules when joining the group is that we reserve the right to cut off discussions that are not beneficial to the group as a whole. But we have not done that. " I did not know this and because of that and some miss infomation and yes I was told that had been banned (by him self in fact) and if this is not true and I have no reson not to belive you Bob. so in that case I am the one that needs to apolagise and so please except this as just that my apolagree for that miss statment " As matter of fact I haven't seen many e-mails on here yet that had all their facts straight. " Boy is this stament is true and I have to agree with you as it has been this way I belive on both sides of the fence and I say that after reading threw all the responces! " No one has ever said that the Board was the owners of " your " personal stories; however, when they are posted on our web site, as some of them are, they are protected under our Copyright. That means that no one can take the information from our international web site without our written permission. You or anyone may personally or privately give your/their own information to anyone you/they wish and no one on this Board is saying that you or they cannot! " Dose this also include the copying of there own personal story from the web sight and then giveing permision to use it as they are the owers and authers of said storys after all and your copy right is more for the plegerisem of use by none owners or other poeple and not the storys owners . this is were things get into gray areas and were the foudation copy rights or not can find a problem. This is also were I belive one of the problems with came from as I saw many post were he was asking for the story owners permision to use there story and also asking for the memberships and boards help in reaching out and getting in touch with the owners so that they could ither give it or denie it. now if the format and story is and was writen by the foudation alone that is a defrent ball game but if the story was not writen by the foudation but was alowed to be used by said foudation the ownership and other uses are still under the persons owership and I belive can not be stopped even in perbetem usage. the only reson this matters is if some one did want to write a book like tried to with or with out the foudations blessings but had the blessings and permisions of the story owners. Best to know ahead of time so that nothing like what happend happens again. " When has anyone answered any of your questions with " BS " ? Your words not mine. Can you give me an example? " The dragon change and no its not the dragon its self but the way and matter in how it was brought to the membership as in for the reson . now remeber my wife and I were involved in the discutions about changeing it and when I asked about it on line the responce I was given was BS. I say that as not one time did the flag come up in those talks at all but a lot of other resons on why did and not a one delt with copy rights or such. I do know there are enough defrances in the two that there is not a copy right problem. they are kind of simular but not a copy of each other by a long shot. now why did this matter ? it matters only in trust and faith nothing other.Most members would not know any thing one way or the other about it but I was the one that asked and I was the one told the BS. if one studies the two one will see that each face defrent directions . one stands on 3 legs and on on 4 legs one has a attached and arrow tiped tougng and one has a detached and fire tougng. one is all red with no detail and one is black and red with details plus more and thuse no sale on the flag for the change so just the truth would have been okay The board wanted a change simple see.. " Again this Board has not said that cannot use anyone's stories and if he told you that he is wrong. We also have NOT told he can not write a book. We do not feel he should use this group to exploit our members for the purposes of gaining information for his book. We stated if he wants to obtain information from people for his book it needs to be done on a private basis; not within the group forum. " I do disagree with how the board delt with on the book as I do not belive you can call it exploting when he had permision to use many of the  the storys that he had from the members and he was trying to get the permision from the rest that is tell the board stopped him from useing the sight to do that . now as I said before the ones posted on the web sight that dose getting into a gray area. I also take ofence that you or any one would even think that some one would belive the board so much power they could tell him he could not write his book as no one could do that short of GOD and the board is not him. now stop him from accessing info now that yes and it was done . by stopping him and not letting him get the permisions that he needed I am sorry that is censership also as just as burning a book or removing words from a lette or a book from a libray shelf stopping on before its done falls in the same boat espacaly when many of the members were 100% behind him and it was there storys he was useing also. I do belive that in no way was so stupide as to use any ones personal story with out permision so we do not even need to touch that topic.  Marty in Carole Triller's e-mail to Hayduke she does say that was less than complimentary with the medical profession and she doesn't believe the booklet should reflect criticism but she didn't say he couldn't do it. " no she did not but it was all part I belive in the out come to stop working with him in making changes to it to a point that all could live with it. I know as well as every one here there are Bad Doctors just as there are good ones and we are lucky that the good do out number the bad but we can not and never should we brush the bad under the rug in any way as they are a part of stills as much as the good ones and each of us. I also belive the letter its self was not very profestional and left a lot to be desiered after all it almost looked like I wrote it and I am almost labled an ileterat in writen english skills. the way it was worded would only insight one responce from any normal human and it is the same one that did take. now to my thinking it dose not matter whaT THE reciver of the letter has done or not done the auther of the letter needs to up hold a serten level espacaly when speaking for a group of otheres like this board and membership at all times ya its no fun when you want to blast as I am sure some would like to at my self but its the way it is and a board member should always post and or send letters whit that in mind they are repasenting the foudation and group as a whole not just there personal self. "  I don't understand your question about wanting the Board to explain when the Board " started to do censorship on the ability of people to contact others to further passing of information, understanding of what it is like to go threw the stages of stills from the start as being scared to death and not knowing any thing, to over trusting doctors to were it dam near kills you as in my case, to full acceptant of living with stills and being adjusted to the life as it dose not happen one step nor over night but in a long path and with many steps!  " this was more of a statment then a question so not fully understanding it is okay. the meaning is when we stop a book or any other kind of infomation from getting to the membership even if we do not always like it that is censorship. Now lets take a book as an example. lets say it contains the storys of many people and there paths with stills some with great doctors some with okay ones and some with bad ones who's decitions lead to or almost to the loss of a life . That to me is info that should not be held back even if it is critical of some in the medical world and they should be included in a book of that kind . Lets add in the storys of some who may or may not have been dignosed as childran of say 4 or younger even and now have grown to adults. This is also info that neds to get out there as it can help a parent of a new dignosed child have some comfort knowing others have gone threw that and still had some what normal and active childhoods. now would it fit in the panflests that the foudation uses No and if they were or some one wanted that included there I would be agaist that as both the wrong media and platform. Now a book based on the path of peoples lifes and DX's of stills that is were it belongs and should be and I belive would have been a benifet to many and who knows maybe even open some ones eyes so that thy did not feel so alone as they research on there own . so to me stopping the ability or gathering of information to that end is censorship especaly when there is time to still have input or even ask for a final none ruff draft ready to go to puplisher / printer copy for final aprovel first before giving any okay from the board or foudation or the use of any of there copy right matterial. " My question is who have we censored and when and how? " I will only give on exaple here. john and his book. the board with held infomation from him even as the work of his was still in a ruff draft form. " What was done, by who and when and maybe I can answer it?   " This has already been answeard in a few ways so see the above responces or read the one below "  " The what was done? we know the use of info was stopped we also know that spelling and gramer were complained about in a ruff draft. but the one I feel was the biggest wrong is the statment we do not need nor do we want your donation at all or some thing along that line. this is a very aregont stament. now would it have lead to any donation who knows but why cut it off the way it was done . to me from reading the letter again it was filled with anger and meannsess not profesalisem and tact. now may not have aproched it right but he also is not a board menber representing us all and that is were the problem lays. The Board should be more open and more prophesianel as even if you send or do things in a privet e mail your still going to be seen as a board member even if you say your doing it as a privet person your still linked as a board member when it comes to any thing stills and the foudation so that being you must at all times act, write, and post as profestionaly as you can as you never know who or how what you have said or done may get used or be taken. "  I would like to answer all of your questions but I can't because I don't have all the information? Another one, " Also add to it why it seems for the most part the over ruling is by two Board members for the most part and if you want to prove this as wrong then post up the votes. " What was over ruled, by who, when? I can't answer your question. I at this time refuse to give this info except for this Bob you and I recived a e-mail the other night on this very fact. I had sent you an e mail about this some time back and never recived a reply at all. I belive I know why now thanks to that e mail I recived and you were CC by another board member do I need to go any deeper? " Fact is I want the Board to post up the votes of all Board members for the last 5 years along with each subject that was voted on. " Marty I have nothing to hide and I have a record of everything including all the votes that were taken all the way back to when I incorporated the Foundation as a non-profit, non-paying, non-voting membership: which means the only voting members are the Board of Directors. As to the previous years voting records, they are in my crawl space attic, packed in boxes with all the other records and due to my health I am not about to try to get them down and go through them. Since I answer to the Board if they direct me to get them out, I will hire someone to get them down for me. " Bob I would not want them to order you to do that as just what is avalable would be more then enough. I thought you may have had them on easy to get computer back ups. I know unlike many of the members that only the board has a vote or say in any thing and that is / has always been the way. this is also why I have done things this way as it is realy the only way we as members have to ask and know were are being listioned to or to garentee that we as a group get the same answears to the same questions and yes the things I have been asking are not just from my self. I also know and I am not a lone that not all of our questions get answeard when sent privetly now there are many resons that may be so doing it this way it reaches all board members and the membership at large so that all know what is beeing said by both partys and thus keeps it on as even of a field as can be. I also know in the past the board did ask the member ship for there vote and or in poles what they thought . This is also some thing that has gone away over time. the reson for asking for the votes is to show a voting pattern board member. Bob as far as trusting you to be honest that I do and I do belive you will respond the best you can given what you have to work with. "  As for the Financial records, they have always been available at every Conference that has been held and I have started every Conference off by stating that. I also have stated before that the Financial records are always available and given a reasonable amount of time I will pay for the reproduction of the copies and provide them to those that request them. " I do not need you to pay for them at all and yes you do open the confrence that way but how many here know that as not all go to the confrance. I also think a closed file on sight that only can be accsesed with a password that is timed to expirer they coud be posted at year end also on line, some thing to think about. Now how many here have known how to even get a copy or who even had them. now this may not matter to many but it dose to some and I have a question on some expenses just as you and did and for the very same resons. again funny what you learn at a confrance when you do a lot of listioning. I also again do not feel it needs to be draged past this point at all as again its a change thats easy to make one that should be made and one that should never be repeated. now was some of it spent in other ways yes and I must say I thought it was a great idea and I hope that is something that some  day can be carried farther as I know I am greatful for it belive it or not!  yes it opened my eyes to many things and not all is bad as I have said and do I suport this sight I just want to see it get better and grow stronger "  As for providing you information on the Donations: I can provide you the amounts only, because some of the donors requested their names be kept confidential. The only ones they are available to are myself, the IRS, and the Florida State Tax people. By the way, there is no law stating that I have to provide this within 5 working days for a non-paying member Corporation! " Wanting to know who donates only became a question when it was stated that the foudation did not need or want a said persons donations or when other acts were taken that also stopped what woudl have lead t known large donations to the foudation. now be that what did matter was were the foudation stood that they could so easly even say such a thing. now seeing what you did post and if its right and again I have no reson to belive its not ( again that darn thing about reading and  listioning alot over the years) some thing of that kind should never have been said and it was very unprofesional! Now as far as a laws say 5 days no your right there is not but there are many laws that do set guild lines and rules about records keeping and responding to. Plus Bob as you well know there are other ways to get things done also but they can make things messy and unpleasent and if I was against this foudation I could go that way the point is I am not because all I want is to see more profesanalisem and resposivens from the board and the foudation. " A bank statement is sent to each Board member Monthly, Quarterly and Yearly along with a Tax Statement each year. It used to be that if we were under $25,000.00 we did not have to file but that has been changed and everyone has to file, which I think is only right. " Know this law all to well and for what was asked in questions this is realy a nothing for the most part " What project did the Board or Rogue member stop? When and who was it, what lies were told? Marty I want to help and get this straightened out but I can't do it without specifics? " this was already answeard but once more I sent you an e mail and never got a responce I found that odd as you neve do that . the other night I recived a email from a board member that was also CC to your self do I need to go into it deeper? If I do I will have to get permision from other partys first. " Stop all Donations and Volunteerism from any member? Since 1 Jan 2011 we have received 19 Donations, that's for 5 months and 6 of those donations were from Board members or their Families and one was from ink cartridges that I sent in for reclamation. And that is not counting the supplies contributed by each Board member so they can do their jobs. In total we took in $693.01 and total expenditures was $861.30. " That is sad I know but then why in the world would board members spot off that we do not need nor want any donations from some one at all? why would a board member(s) stop a project that cold have lead to a donations of hunders of dollares if not more as I can not remember the figure now that was promised at the end to the foudation? no I do not think we should lower our standers just for some donations but I also belive the two I listed here were not that had they been given fair treatment and a guilding hand instead of a stop sigh and a go to jail do not pass go card. " I am going to jump down to the part about the web site because there is a lot that you and others don't know about it and it's time you found out. In 2002 one of our members offered in good faith, her boyfriends services to take care of our web site: rebuilding; repairing; updating it, etc. Well for the first two years everything went along fine and things got done well. Sometime in 2004 things started slowing down and it became harder to get changes made. Contact was harder with this boyfriend and I guess it was chalked up to his being busy. Then sometime in 2006 contact ceased and all attempts to contact this person were met with a stone wall. All sorts of problems came up with the way the contacts were attempted. People were sending fiery e-mails to the boyfriend and then the member got all upset about it and it turns out that our web site was held hostage so to speak. I personally tried home phone, cell phone, fax, and left messages numerous times but all to no avail. In the latter part of 2010 I found the telephone number of the partner of this boyfriend and I had a friend of mine, who we'll call Rad; who is a Senior IT for IBM, who agreed to help me contact the partner. Since then Rad has moved the entire web site from the boyfriends server to his server and is presently trying, as his time from work permits, getting all of our web site transferred and copied to his web site. Once this is done we will have it transferred in total to our own server. The server will be free of charge since we are NPO. In the meantime we have been making tons of changes to the web site and why you haven't seen any changes I don't know but they have been made and they are continuing. I wish that everyone knew what was involved in transferring an entire web site twice and especially a web site as large as ours. It is over 100 pages.. So what have we been doing? On the subject of members histories on the international web site: some people have asked that their stories be removed, and have revoked the permission for them to be used. We have been unable to do that because of the circumstances outlined above; however, we will be able to soon. " I was more then awear of the problems of the web sight and you over simplafide things some what as there were a few other poeple also involed not for long but just enofe to make a bad mess worse. I allso know that in the mix there were other factors that helpped lead to it all and they were not any ones fault at all but just the way thing hapen at times. now the reson for bringing it up is because of the time frame . how long dose it take I am fully awear of that noot because I do it but because I know people that do and its there job . My son is also a web desiner and grafics artest. He also has set up many web sights and is hosting at lest three on his personal server right now. so yes I am a bit more informed then the avrage joe on computer things being its also a hobie and one time busness I owned. now I did not build web sight I built costum computers for gamers and servers for specail aps. again only to show I have an understanding nothing more. as far as transfer time it is not always easy but I have also offered my help many times as that is one thing I have pelenty of and thats time and being I put in lots of computer time I could eaasly volatered much of it to the foudation if I had been asked. " What ground breaking things have we the Board done? Well, I send out approximately 5000 Brochures per year to every Country in the World. We now have Doctors referring patients to our web site. We are working on a possible sponsor for the Foundation, but you don't see or hear about that because we are not supposed to get hopes up in case they fall through. If this sponsorship falls through I can hear it now: " Wow, the Board really screwed that up didn't they? " We facilitate and donate time for Chat moderation; moderate the Still's support group; send out gifts & cards; and make phone calls to members. We maintain a crisis line and more. All of these things are done on a volunteer basis. If you can't list one thing we did Marty you aren't reading enough, not reading the right things, or your listening to the wrong people. " okay Bob my trun if you had read my question you would have seen I said besides the out of date web sight and the panflets / Brochures and the yahoo chate sight what has the foudation done ? and Yes I could not list one and why was that well you just said t the board had not told any one they were working on getting a sponsor for the Foundation. now I also consider the crisses line apart of the web and chat sights as it is listed and advertised on both as it should be but I did forget about some thing that may seam simple to some but is a big deal when your the reciver and that is  gifts & cards; and make phone calls to members. so once more I apolagise for that as after all I am human and make mistakes like every one. now Bob not to carry this on but What do you think the Board could do to inprove out reach to the, members and Medical peoples for better particapation, involvment in resurch and studies along with keeping it up dated on a timely fastion going forward. What are the back up plans not in detail but ruffly incase of another web sight break down? what is the backl up plans if one or more board members can no longer do there jobs for what ever reson ( I do not wish this but its a fact of life)?  How do you see the board going forward and being respocive to members questions and ideas besides just posting them on the chat sight or sending them privetly were other can not see then and agree or dis agree? No one is going to ban you and the only way you can leave this list is if you un-subscribe yourself, which I hope you don't. You add a lot to this group and I understand your wanting answers, but before I give you answers I need to know what you want. The same with ; the only way he can leave this group is if he unsubscribed himself, which I hope he doesn't do. He has a hell of an idea. If I was him I would have probably reacted the same way that he did until I sat down and digested everything and " didn't read between the lines " ! Perhaps the letter to wasn't worded the best but the foundation has taken accusations that were a bit one sided without the chance to respond. " ...to further this foundation in two ways one in increasing the knowledge about stills in the medical world and the other in the memberships knowledge of what is going on in the medical world on stills such as studies ,trials, research ect. I am not talking about what has happened I mean as in what is coming up and what is needed such as volunteers for studies, trials ect. so far the only time I have seen any thing about these topics is when a member post on them not the board passing information in a timely fashion. nor are any posted on the web sigh but then too that is and has been so out of date that even the... " Our recently returned nursing director, Kathleen Brown, posted on May 17, 2011 at 9:40 to the Yahoo Still's support group a current recruiting study to include Still's patients and the National Institute of Health. She had been voted back onto the Board of directors at that time and the support group had been notified. Kathleen Brown has done numerous hours of research for her posts in the short amount of time since her return just several months ago. The foundation also has a European liaison working with us now on future projects. The group was notified of several months ago but all new developments such as putting together expanded conferences, if there are to be any considering the lack of funding, take time. Tom, Uncle Fuzzy, has done many, many posts about medical information that has been very helpful to many over the years and posted informative articles at the files section of the web site. We do have polls at the yahoo site and few to none vote. We have added new features to the site like the mapping of members who wish to add their contact information. We do have links and files pages that others can use. We did design a new dragon logo on our programs that do get distributed worldwide with foundation funding and so much more that is not readily apparent without listing every single job we do! Thanks for your input and let me know what you want and I will get it together for you. International Still's Disease Foundation, Inc. Board of Directors Bob I am full awear of the many things on the yahoo sight as I am with  Tom, Uncle Fuzzy postings. I was also glad to see Kathleen Brown back but a bit distrut that another person was missing and not one word was spoken of them yet they to were on the board but are not now at all . I am awear of the poles but have not seen any thing said about them in a very very long time like they used to be on the chat sight. point being many never go beyound the chat sight just as some never care for any thing but the medcical end of things or some like my self the emotional and make you feel at home or a smae bit of advice on how I made it or managed it as in life. So for each there are many resons or maybe one reson they come here but there needs to be a form that is open to do a few things and that is pat on the back when its called for and yes as I have been doing call things out when thats whats needed. what I know you Bob and a few other know is I care about the foudation and people with stills like few can understand because between stills and bad doctors I almost lost my life. Now do I want pitty for it O hell no and in fact I am glad for it and the way it all truned out because it made me more open minded on how a person could feel like that were before I could have cared less. I also feel for a parent with a child with stills and why because I was that child only I and my parents did not know it then and now I am a parent anda gradfather so I have worn both shoes . now many hurtfull things have been said and that is true and may be I am ruff and in your face but that is who I am but theres a few things I will have a hard time over looking any more and so with that I may be back and I may not be I do not know yet but I am taking some time away and as a reminder of me the redneck I leave with my raw writeing and no spell checking so you and all can read it as I wrote it from my heart so to those that wanted to see me leave know this you did not win you lost because you lost me and may be for good to the rest I am sorry but some times I have to walk away to pull things together and then re look and decide if I even want to come back. see I was hurt more then any of you will know it was not just the words post and e mails but it was what I felt I had to do it was not easy yet no one seamed willing to do it yet I would get the e mials oc questions and or even complants so I spoke and now I say good by for now at lest. 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