OK It is now 10:14pm on a Sunday on which I had hoped to grab a few moments with my wife and children. Since 9am this morning I have been barraged with emails about some issue that has been blown out of all proportion. No sooner had I thought I had solved this and was ready to make a post to let everyone know the good news, do I see some pretty vitriolic stuff attacking me personally. WHAT IS GOING ON!!!!!DOES ANYONE GIVE A HOOT!!!!
What is going on is that for the last five days I have been trying to make contact with Karen about what seems a pretty good idea (we have played tag). We love ideas and the enthusiasm that comes with them. Please understand that the way I work is not through message boards but by direct contact with people. It is far more interactive and less prone to misunderstanding. This matter is entirely between Karen and myself, and I am dismayed by the number of people who have gotten involved with this and who have chosen to vent not directly to me, but on the message board.
Karen was able to call me back at about 4.45pm on Friday when unfortunately I could not take her call. We agreed to make contact over the weekend and we were finally able to do so after some phone tag this afternoon about 4pm. But this was all after several other long phone calls that I had to make due to some more email and postings that were made since Saturday.
It seems that Karen had received an anonymous email from someone warning her about me/Synechion/IAS. What does this mean - "warning"? What were they trying to suggest? Were they trying to suggest that we were up to no good? Was this someone trying to sabotage the IAS? Who was this anonymous email from? Why did they not identify themselves? Anyway Karen made a pretty nice post about this, which I appreciate, but I do not appreciate the conclusions jumped to by all those who chose to be influenced by this warning.
As I said we finally made contact about 4pm and were on the phone for quite some time. I would say that it was a pretty nice conversation and could have gone on longer, but Karen needed to get to Church. Karen is certainly a sincere lady who wants only to see to it that no one has to suffer like her daughter (and her family as a whole). These are sentiments that we can all agree with. Karen also seems like an extremely practical and capable lady who would be a HUGE asset to the IAS.
Anyway we agreed as follows: 1. This Oprah project is a pretty good idea and we had some additional discussion about how it could be made even more powerful, and about how we can add some other elements to it. I told her that I would be happy to provide additional materials, if appropriate. 2. We will be meeting in the next week or two, but because of Karen's prior engagements and my travel this week, it will probably not be until next week. (Karen lives pretty close to Dallas, so it will be easy to meet) 3. We will hold off on making a final announcement about this project (ie the who, what, when and where) until we have had a chance to meet, and we will hold off doing anything further that may need to be redone because of the possible enhancements that we talked about. So at this time I would ask that you all calm down and wait to see what we will come up with. Let's keep this off the message board for the moment, until all the details have been worked out.
DISCUSSION TABLED (see part 2)
WHAT HAVE WE COME TO?? Part 2. A Sunday from hell. (from part 1)
And so I thought we had come to a nice resolution on how to proceed, until I looked at some of the posts made later today.
Now to the next issues about ownership of stories. And for this I am totally offended, hurt and insulted about the insinuations that have been made about me personally, my company Synechion, and the IAS. It has totally marred what I had hoped to be a major announcement about the future of the IAS and how we have secured some significant help to move forward. You will have to wait later for that, as it is now 10:34pm and I still hav'nt finished this letter.
Now before I continue I must say that I have been criticized for my lenient policy about the way people have used our site, in particular the message board. I have tried to allow as much expression as possible, and only in limited cases have we needed to pull offending messages. We have been extremely liberal in allowing people to express their thoughts and ideas. After all we need good ideas and enthusiasm to help us achieve our goals.
So it is now time to clarify some rules (these serve to add to our existing policies, rights and responsibilities). I am sorry to have to do this, but these recent nightmares must stop. We cannot continue to waste our time on this nonsense when we have ARD patients who are suffering and needing our help. (I have about 30 emails requesting immediate help that I could not respond to because of this issue)
Please understand that this web site is the product of many thousands of hours of work on the part of many people all over the world. Common courtesy, "netiquette" and plain legal considerations common to all web sites (eg Oprah.com) dictate that visitors to our web site follow a few simple rules, intended to benefit all visitors to our site.
1. Please do not use this site, its quilt or message boards to promote your own product or web site.
2. We welcome any idea which will promote the objectives of the IAS, including awareness of adhesions, and support for patients that suffer from them. But PLEASE contact us first. The place to discuss this is first with us, since there may be programs underway that could benefit your idea, or could benefit from your idea. Chat rooms and message boards are useful tools, but they do not take the place of the telephone. First of all please email us to start the ball rolling.
3. Please do not use our web site to poach names and email addresses for your product, service, web site or other project or fundraiser. We have had some very nasty examples of this where companies have gone directly solicited patients for commercial purposes, and where a patient's privacy has been invaded and their condition exploited for commercial gain. If there is something you wish to say of this nature, please contact us first. This is done for the protection of our members and visitors.
4. If you want to make contact with any of our members or visitors, then please contact us first about the most appropriate way to do this.
5. If you want to make use of stories a patient has posted anywhere on our web site, you will need to secure the permission of that patient to do so. We do not own those stories as individual stories, but only in their aggregate (see my further comment below on this). This means that if you wish to use a small number of stories for personal use only (see Terms and Conditions below), it is entirely appropriate to email the author and ask their permission (I suggest that it be made specifically clear whether anything that identifies the patient - name, address, email address etc., be anonymised. You must always acknowledge http://www.adhesions.org as the source). However because of rule #3, there is a problem of using the site to obtain the email addresses of any of the members and to solicit them for your own purposes.
Since Oprah Winfrey is (justifiably) highly regarded, we though we would take a look at the terms and conditions of postings to her web site. Now who would argue with Oprah Winfrey?
So EFFECTIVE IMMEDIATELY we ARE IMPLEMENTING THE SAME RULES, TERMS AND CONDITIONS AS OPRAH HAS ON HER SITE, WITH THE NECESSARY CHANGES TO RFELECT THE FACT THAT WE ARE SPEAKING ABOUT THE IAS AND http://www.ADHESIONS.ORG. For the moment you can check out Oprah's House Rules at: http://www.oprah.com/com/boards/board_rules.jhtml and Oprah's terms and conditions at: http://www.oprah.com/about/aboutharpo/about_harpo_terms.jhtml
We will make an appropriate posting about these terms and conditions in the near future.
[Comment about ownership of materials on the site - I am grateful to Karen who pointed out to me something that was not immediately obvious regarding a potential copyright issue. My initial position was that I had no problem with individuals sending their stories anywhere (and I still don't) - it is entirely up to them and we certainly DO NOT own them. We cannot give permission to something that we do not own. However after Karen and I spoke (so I apologise to Karen since I could only do this after she pointed this out), I made some inquiries, and it turns out that the issue is not so much ownership (although it is true that we own the materials in their aggregate but not individual forms), but one of use of the site. Just as I cannot set up a lemonade stand on someone's front lawn without their permission to sell lemonade, no one can come to a web site and promote a product/ web site or service without permission, NO MATTER how good or important it is. This includes soliciting for a project. This idea is expressed in the way that the Terms and Conditions have been written on Oprah's site. All this is a long way of saying, we love ideas (like Karen's) and please contact us first to discuss them so that they can be implemented] (see part 3)
WHAT HAVE WE COME TO?? Part 3. GOOD NEWS: PR CAMPAIGN
>From part 2
AND NOW FINALLY to the GOOD NEWS (a shortened version)
After many years of lobbying companies, one company has agreed to fund a significant PR campaign to heighten awareness about adhesions. Details will follow (it is now11:52pm) but the essence of it is that we have now a professional PR and lobbying firm that will help us devise and implement significant and effective international campaigns that we hope will lead to the reduction of ARD suffering.
This is not to ignore or belittle in any way the efforts of many of our members. Those efforts have enabled us to get to this point and we say a HUGE thanks to all of those (you know who you are - I'm sorry if I have not acknowledged all of you personally, but please send me details of any work you have done) who have been in the trenches for so many years. But we now need to take a quantum leap in how we go about our business.
This campaign will need to concerted efforts of all of us if it is to succeed. There is no point in people working at cross-purposes, we need to coordinate our efforts and reduce misunderstandings. The best way to do this is by sending either of us an email: David.wiseman@adhesions.org
But most of all this is a significant milestone for us. We have come a long way, and this will take us further.
If you have any comments, please address them by email.
I look forward to working with you all in this new phase of our development.
Sincerely David Wiseman Ph.D., M.R.Pharm.S. Founder, International Adhesions Society (IAS) http://www.adhesions.org david.wiseman@adhesions.org
Support for the IAS is provided free of charge by Dr. David Wiseman and Synechion, Inc. Please consider joining the IAS by making a (suggested) contribution of $50 (via PayPal and includes a set of the IAS Conference Tapes).
Or, if you prefer, make checks (non-deductible) payable to SYNECHION, INC. and mail to Synechion, Inc., 6757 Arapaho Rd., Suite 711, PMB 238, Dallas, TX 75248 USA
Your other contributions are also welcome to help bring information and support to ARD patients around the world. Click here to donate via PayPal.
Neither the IAS, Synechion, Dr. Wiseman or any other representative offers medical advice. Always consult a qualified medical professional.