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Board of Directors discuss Message Board conduct

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Lisa Salberg Find out more about Lisa Salberg
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  • Board of Directors discuss Message Board conduct

    We as members of the Board of Directors of the HCMA encourage networking and sharing of information and support throughout the membership. The use of the message board and the private message feature on the message board can serve as invaluable tools for these purposes, however, they can also be misused to convey negative messages, or purposefully frighten, intimidate, or defame others. In the event such actions are brought to our attention we are compelled to take action to help remedy the situation.

    It is with great thought and contemplation that the HCMA had to lock out a message board participant. Our objectives at the HCMA state that we strive to "develop and maintain a network of SUPPORT for people with HCM and their families." We believe that the actions of this individual have not helped to create a supportive environment.

    In the case of the person taken off the board, the HCMA has received 4 complaints from 4 different people over the past 4-6 months, all with similar complaints and terms used in the messages received. We had hoped that this person would stop sending this type of messages to those seeking care, but that individual has continued in a manner that is inconsistent with the objectives of the HCMA.

    We work very hard here at the HCMA to provide sound, balanced, and credible information. When postings and/or private messages are harmful, hurtful, and/or create an atmosphere of hostility, for the good of the majority, we are forced to take that person off the board.

    Please note that the individual being taken off the message board will not be without a means of support. We at the HCMA will remain available to them for questions or concerns they may have in the future, they can reach us by phone or email.

    This decision and posting has been reviewed and approved by a majority of the board of directors and we do not take this action lightly. This is the first time we have had to inactivate a user and we hope it will be the last.

    Sincerely,

    Lisa Salberg
    On behalf of the Board
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Re: Board of Directors discuss Message Board conduct

    Dear Lisa,

    As a former Moderator, I know how difficult this was for you to do and I applaud your efforts to keep the board a welcoming place for everyone.

    I believe I know of who you speak, and if this is the case, then I'm very grateful as I would actively avoid threads where this person had posted because they were liable to make me very upset. There isn't anyone, ever, that I've avoided like that on this board and I've read every single post over the last two years!

    If anyone decries your actions as censorship, I would remind them that this is not a news outlet, this is a support group. The rules are different here, and I know you bent over backwards to prevent this from happening.

    thanks,

    Sarah

    Comment


    • #3
      Re: Board of Directors discuss Message Board conduct

      I don't have a problem with someone being removed from the board if they were using abusive language and/or sending offensive, obscene, or intimidating emails or private messages to anyone. I've never seen that here personally, but i also don't read every post either. Sometimes when people are very sick, down and out, they say things in the heat of the moment that they later regret. I have made that mistake myself on occasion, and i think many of us have. I've also seen some lively and healthy debate sparked on occasion that some considered offensive, where i have said 'bring it on'. I like to be kept on my toes, and if anyone ever has a problem with what i say, feel free to tell me you think i'm full of cow patties. I promise i won't cry and run away... or complain to the management.

      Anyway, i know that the powers-that-be must have had very good reasons for booting the person in question, and therefore i support it. I just hope that people don't stop engaging in what i consider to be healthy and productive dabate for fear of retribution from anyone on the board.
      "Some days you're the dog... some days you're the hydrant."

      Comment


      • #4
        Re: Board of Directors discuss Message Board conduct

        Jim, you're right. Debate is fine, as long as it's kept civil. It's when members PM comments meant to intimidate the recipient or defame others that we have a problem. That behavior can't be tolerated. As Lisa said, there were several complaints about this behavior that led to the executive decision to remove that person from the board.

        Reenie
        Reenie

        ****************
        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.

        Comment


        • #5
          Re: Board of Directors discuss Message Board conduct

          Jim,

          I agree with you --debate is needed and useful ---and I know Lisa feels this, too. Controversial comments are not censored here.

          I've been with this board a long time and the only editing I've seen has been removing personal information or correcting errors.

          While it is true that we often says things we regret or want to take back, that doesn't mean you should be allowed to continue to make mistakes. If someone repeatedly refuses to abide the rules of engagement (no personal attacks, for example) then that is a whole other kettle of fish.

          Also, if someone regretted their behavior, then they would change it instead of continuing it.

          I trust Lisa's judgement and the fact that entire board agrees with her, says a lot.

          seb

          Comment


          • #6
            Re: Board of Directors discuss Message Board conduct

            Hello,
            I have returned from Atlanta and have not had access to the board since Friday morning.
            It was a very difficult decision, removing someone from the message board, to make and I thank our board of directors for there action on this matter.

            Yes, debate is good, needed and very welcomed here. The issues that lead to this person being taken off the message board were way beyond debate, opposing views or the use of bad language. When people are in a fight for there very life, the use of good judgment is paramount. If the judgment of that poster fails, we must act.

            I thank those who understand how difficult this was and also how needed.

            Sincerely,
            Lisa
            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)

            Comment


            • #7
              Re: Board of Directors discuss Message Board conduct

              Lisa, I hope your trip went well. I know the past week has presented challenges most difficult to deal with.

              I also would like to take this opportunity to reassure our membership that these difficult decisions are not taken lightly or reviewed in a hurried manner. The Board of Directors, although not making frequent visits to the HCMA office, are actively involved in major decisions. We are very proud of our President, Lisa, and her many accomplishments. We are proud of our membership and continue to be amazed at the support, information, and caring they extend to one another. Even though the Board of Directors seems to be a bit invisible at times, we are here for one another, for Lisa, and for our membership. Thank you all for your contributions and efforts to make the HCMA and message board the successes they have become.

              Linda

              Comment


              • #8
                Re: Board of Directors discuss Message Board conduct

                Thanks all,

                Since i'm not exactly an idiot, i do know who we are all talking about, and i have never in the past found his posts to be offensive in any way. But if you tell me that there was more going on than what i know about (i.e. private messages of an offensive nature) then i will of course accept and support your decision. I have never had anything but the greatest respect and admiration for those of you who have made this board possible, and i hope i have thanked you all well enough for your hard work.

                My only concern of course, is that people get the information that they need. I also wonder if the people that upset us the most, aren't the people who also need the information the most.

                Thanks again to everybody for your hard work. I know i can be a pain in the butt sometimes, but one thing i have learned (and maybe the only thing i have learned), is that if you don't question something, you will never get an answer

                Jim
                "Some days you're the dog... some days you're the hydrant."

                Comment


                • #9
                  Re: Board of Directors discuss Message Board conduct

                  Dear Jim,

                  Please note that the individual being taken off the message board will not be without a means of support. We at the HCMA will remain available to them for questions or concerns they may have in the future, they can reach us by phone or email.
                  They can still read everything on this board, still call Lisa, still come to events, get the newsletter, and everything. They just can't post a message here because they couldn't play nice.

                  Which is too bad.

                  S

                  Comment


                  • #10
                    Re: Board of Directors discuss Message Board conduct

                    Linda, Thank you for the posting.

                    Jim, You have added lively debate and I admire you for your ability to ask, question...rethink, ask, question...rethink...and so on and so on. It has lead to some great posts and has helped me see where people may not clearly understand and where we can do better to help answer these questions. I have never thought you were a "pain", yes, some of your postings made me stop and do a little more research and work then others (which all takes time)...but pain never... good questions heck yeh!

                    Sarah, Thank you for reminding people that although this person was taken from the message board we are still happy to help them.

                    Being diagnosed with HCM is hard for everyone, those with it, our loved ones, and our friends. It is often hard to take in all this information without some of it becoming overwhelming. I do think that is the case here. If I had not received calls, private messages and emails regarding private messages and private emails (most of which had been forwarded to me, some had notes of concern about these messages) these actions would not have been required. Interestingly after the board of directors had been notified and the action plan was agreed upon, yet one more message arrived with the same concerns as the previous 4.

                    Further, I have also been advised that the person who was taken off the board has been sending emails about me personally and I would like to say very publicly if any member of the HCMA, message board or otherwise has any questions, comments or concerns with me or the HCMA that that please let us know. This person has made statements that imply wrongdoing on the part of the HCMA and myself.
                    If there is a problem, the only means of correction is notification that there is a problem. However, I do not think this is the case as everyday we receive dozens of emails, calls and letters thanking us for our work. To date this is the first person to ever say they have a problem of any kind.

                    I trust that those who use this message board know what the HCMA is here for, to help those with HCM LIVE as normal a life as possible. I have committed 8 years of my life to this "cause", mostly at great personal sacrifice (effort, financially, days when MY HCM is ‘acting up’ and time with my own family). I guess when someone gives that much of themselves there will be someone out there to find faults, and if you have constructive criticism, let me hear it, it you have a complaint, let me know, otherwise please be aware that remarks aimed at tarnishing my reputation will not go ignored.

                    Sincerely,
                    Lisa
                    Knowledge is power ... Stay informed!
                    YOU can make a difference - all you have to do is try!

                    Dx age 12 current age 46 and counting!
                    lost: 5 family members to HCM (SCD, Stroke, CHF)
                    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                    Therapy - ICD (implanted 97, 01, 04 and 11, medication
                    Currently not obstructed
                    Complications - unnecessary pacemaker and stroke (unrelated to each other)

                    Comment


                    • #11
                      Re: Board of Directors discuss Message Board conduct

                      Lisa,

                      Being in charge means taking the occasional bullet. After eight years of HCMA leadership, I'm sure no one knows that better than you. Sometimes leadership means doing the right thing even if it results in unfair criticism. You guys did the right thing. Most of us out here know that. The overwhelming majority of us would support your decision even without the details because we have faith in your leadership.

                      Bill

                      Comment


                      • #12
                        Re: Board of Directors discuss Message Board conduct

                        Ditto Bill.
                        Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                        So if you are capable of thought then you are capable of great things
                        Good luck and stay well.
                        Glen

                        Comment


                        • #13
                          Re: Board of Directors discuss Message Board conduct

                          Thank you.

                          You both have had so many wonderful contributions to the board, your input means a great deal.


                          Lisa
                          Knowledge is power ... Stay informed!
                          YOU can make a difference - all you have to do is try!

                          Dx age 12 current age 46 and counting!
                          lost: 5 family members to HCM (SCD, Stroke, CHF)
                          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                          Therapy - ICD (implanted 97, 01, 04 and 11, medication
                          Currently not obstructed
                          Complications - unnecessary pacemaker and stroke (unrelated to each other)

                          Comment

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