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Thread: Prediction: Probable Forum Closure

  1. #1
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,945

    Unhappy Prediction: Probable Forum Closure

    One year ago, on July 30, 2016 the following thread was posted: Urgent Appeal to Tourette Canada Forum Members.

    While there were a number of well-intentioned responses, the long term outcome hoping for increased participation from Forum members has not materialized.

    My prediction is that the Tourette Canada Forum will probably discontinue by the end of 2017, not because there is no need for it, but because Tourette Canada management has neglected to provide the necessary support, input and awareness to bring new members to the Forum or to provide manpower resources to assist David, me and our volunteer moderators and has all but ignored this Forum when promoting its own support services. In addition, for whatever reason, with only a few exceptions, Forum members have not come forward to respond to new posts, comment on existing topics, or initiate new discussions.

    Responses to new members have relied on Forum staff for input, and new posts have been confined to re-posts of Tourette related topics from news and other venues by volunteer Forum staff.

    It was great while it lasted, and many people struggling with their own Tourette have been helped by the resources this Forum has been able to offer but the lifeblood of any online Forum is input from members and this Forum no longer has that.

    We must face reality and respect the interests, the technology and priorities of everyone concerned in 2017, that this format does not seem to have the interest it had just a few short years ago.

    The tragic consequence of this Forum's likely closure is the internet will be left with no evidence based peer to peer support venue for Tourette Syndrome, especially following the recent closure of the Tourettes Action Forum in the U.K. which I was also a part of. Tourettes Action decided to close their Forum for similar reasons.

    The loss of traffic by new members and the lack of participation by current members, makes it difficult to justify the time and effort required to maintain and monitor the Tourette Canada Forum.

    As a result, my own regular check in schedule will be curtailed to once weekly, at the very most. I have alerted Tourette Canada about the probable closure of their Forum which has persisted only because of the dedication, time and effort of David Baxter and myself along with a precious few volunteers.

    I hope the Tourette Canada Board and Tourette Canada management will find a way to keep the Forum operational. Feel free to make your feelings hears by contacting Tourette Canada.

    What are the consequences of less frequent check in by staff? Greater potential for security or malicious intervention and less potential for a meaningful response to a (currently infrequent) urgent query.

    On a personal note, I will be profoundly disappointed to see this Forum's demise, having devoted hours per day spanning the past fifteen years in the hopes of providing help, information and support to the Tourette community. I have lived with my Tourette for over seventy years, and grew up in an era when awareness of Tourette was virtually non-existent. My own childhood was horrendous having endured punishment, teasing and rejection by family, teachers and peers. My motivation in bringing evidence based information has been to preclude kids and adults from experiencing a similar fate due to lack of understanding and awareness of the true nature of Tourette Syndrome by parents, school authorities, employers and peers and to ensure they were pointed in the right direction to get accurate information for competent support and resources for treatment.

    I am thankful for the support and assistance of Dr. Douglas Woods PhD, Tourette researcher and one of the leading architects of CBIT for helping me in my understanding of CBIT which allowed me to increase awareness of this form of treatment on this Forum, on the now defunct Tourettes Action Forum in the U.K. Thanks to Dr. Robert Dykes PhD, Board member of Tourette Canada who worked with me to initiate CBIT training in Canada with the help and cooperation of Dr. Woods and a group of dedicated Canadian psychologists, Dr. James Brazeau PhD, Dr. Mariève Hurtubise PhD and Dr. Kim Edwards PhD.

    My sincerest thanks for the dedication of my friend and colleague, David Baxter PhD, retired clinical psychologist, who, way back in the beginning, conducted a fundraising event to purchase the license needed for our vBulletin Forum software. The operation of this Forum would not have been possible without David's commitment to maintain the software over the past fifteen years, his availability to advise me when responding to complex psychological issues often brought up by Forum members, and his unwavering support of the Forum, despite his serious health related challenges in recent years.

    I am proud to have been a part of this effort and I especially thank two Forum volunteers who, did their best in recent years to have added their own valuable perspectives to the Forum, Tina who has had extensive experience in Tourette support, including her employment with the Foundation several years ago, and most recently, Aparente001 who has offered valuable insights in recent years taken from personal experience living with Tourette.

    Please support your local Tourette advocacy organization in your own Country or locale.

    Hopefully the future will find ways to provide effective and timely fact based information and support to not only the Tourette community but to all individuals needing mental health support and information.

    In the meantime, I will continue to assist David Baxter on our Psychlinks Forum, a mental health and psychology, peer to peer support and information Forum, that offers an area dedicated to Tourette discussions. Perhaps we might see you there!

  2. #2
    Join Date
    Jan 2016
    Location
    Vernon, BC
    Posts
    63

    Default Re: Prediction: Probable Forum Closure

    I care!!
    This news brings me great sadness. Given I am only a mother of a TS kid who has only had diagnosis for a year, I have not had the experience or knowledge to be more active in replying to posts but I feel it's an important global resource.

    I found the only way I was abreast of the issues/posts was when I'd get an email reminder of recent posts, but I have no idea why I wouldn't always get them or when the system would decide to generate them. Due to this I was not always updated about recent posts. Perhaps this was a similar experience for others?
    A loss of this forum would be a devastation to many: those wondering about a diagnosis, the newly diagnosed and the seasoned who could network and share issues as they progress as well as share from their experiences for newbies. As only works within an organization that relies on peer-to-peer help, we'd need more of the more experienced TS'rs out there to come forth and reply, but maybe everyone is experiencing like myself that forum posts notification aren't even reaching them?
    At this point I don't know what else to say, I hope Psychlink will offer what the forum here was supposed to, if this awesome forum with all its resources closed. I wish TS Canada would step forth and do what it takes to make this forum vibrant, and support it, promote it, etc...
    A million thanks Steve and David, and everyone else who made effort. Closure of this forum would suck.
    Sigh,
    Laura

    ---------- Post Merged on August 2, 2017 at 06:54 AM ---------- Previous Post was on August 1, 2017 at 09:17 PM ----------

    Further I wanted to mention that this thread, tho important, did not pop up in my email notifications. Instead a TS Canada notice , "you haven't been on in a while, can we tempt you back?" Did. Had I ignored it, I wouldn't know this important thread/notice is sitting here. How many others aren't getting notice either? Something has run amuck with notifications.

  3. #3
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,945

    Default Re: Prediction: Probable Forum Closure

    Laura,

    Thanks for your feedback! You may want to communicate your concerns directly to Tourette Canada so the Board and the administration can better understand the need for this Forum and provide the necessary resources to keep it going.

    To my point about lack of input from current Forum members, this post, as of now has had 60 views, with only one response, yours.

    It's been said over and over again..the lifeblood of a Forum is the participation of its members. We just don't have that anymore and so it's just not worth the manpower nor hosting expense and maintenance to keep it going. If Forum traffic can increase with input and participation by forum members, I would be more than happy to recommend its continuation.

    I wanted to mention that this thread, tho important, did not pop up in my email notifications. Instead a TS Canada notice , "you haven't been on in a while, can we tempt you back?" Did. Had I ignored it, I wouldn't know this important thread/notice is sitting here. How many others aren't getting notice either? Something has run amuck with notifications.
    It may have to do with the last time you were active on the forum, and the software automatically sends a reminder...but I'll defer to David Baxter for the definitive answer.

  4. #4
    Join Date
    Sep 2005
    Location
    Ottawa, Canada
    Posts
    799

    Default Re: Prediction: Probable Forum Closure

    You would not normally get a a notification of such announcements unless you specifically subscribed to them.

    The forum honors your privacy preferences, as defined by your Settings.

    As long as you are subscribed to our weekly newsletters, you should receive that on a weekly notice but the current newsletter has itself been buggy. I am looking at and trying out a new one but it too currently is not working as it needs to.

    I will send out a special email about this thread to all members who have no opted out of receiving emails fro the forum.

  5. #5
    Join Date
    May 2016
    Location
    Calgary
    Posts
    1

    Default Re: Prediction: Probable Forum Closure

    I too am sad that the forum will be closing. I have had similar frustrations with Tourette Canada. I currently am an in-service provider, who updated the slides, with the help of Dr. Tamara Pringsheim and two local psychologists, to reflect current understandings of TS+, accommodations and strategies for parents and schools. I have read many of your posts over the years and have truly appreciated your evidence based approach to TS+. While I have seldom posted, usually due to my anxiety issues, (I have reread this small contribution too many times already!), I have appreciated what you have offered here. I too have been ignored/not listened to at the national level, but just recently received an apology and things are starting to move forward. I hope the same happens with this forum. Again thank you for all your efforts!

  6. #6
    Join Date
    Nov 2015
    Location
    USA
    Posts
    7

    Default Re: Prediction: Probable Forum Closure

    There was a time when I desperately needed help addressing my son's needs. After trying everywhere, I looked outside of my own country for help through the Tourette Canada Support Forum. Steve was incredibly responsive to my posts and helped me to better support my child. This forum is a gift to all those with Tourette's and their families. No where else is support as well researched and responsive. My child's tics have diminished greatly with time but still pop up often enough. As he continues to change and have new experiences in the world, Tourette's will always follow him and complicate life. Please continue this highly helpful forum to help people with Tourette's throughout their lives. Many thanks to the dedicated monitors who have shared their concern and knowledge.

  7. #7
    Join Date
    Jan 2016
    Location
    Toronto
    Age
    51
    Posts
    1

    Default Re: Prediction: Probable Forum Closure

    Hi,

    I have recently been diagnosed with TS. The occurrence of my tick-like movements and vocalizations are infrequent and for the most part they don't adversely affect my life style.

    Question: Do I believe the this and other support forums have a place in the TS community? Answer: Yes.
    Question:Do I wish to see this forum close? No.
    Question:Do I have the solution. Answer: No

    I joined this group so that I could better understand myself. A forum is a wonderful idea but in the day where my life has so many distractions and demands I don't feel the reading of message threads to be a effective way of communicating. I also find that the format of this forum (like many others) are increasingly difficult to navigate. (i.e. too many things on the screen cause too many distractions and frustrations). Last, I found myself not comfortable posting because most of the posts were coming from concerned parents and as an adult found that my concerns were out of place.

    That's all I have to say for now. Wishing, everyone the best in their challenges dealing with TS.


    Best Regards,

  8. #8
    Join Date
    Mar 2014
    Location
    California
    Posts
    2

    Unhappy re: Prediction: Probable Forum Closure

    I'm down in the states (northern CA). My 2nd son has Tourette's sysmptoms started at about 8 years old with picking out his eyelashes. He just turned 13. His symptoms have been mild to moderate, but in the last few months they have increased to severe, preventing him from sleeping and compromising his speech. I admit to not getting on forms very often (life often interferes), but it's helpful to know that it's there.

    I do not understand why a form like this would have to close because an administrator doesn't think there is enough participation. Once built, online forms take on a life of their own. Just because there is a temporary lack of participation doesn't mean it isn't "operational" any longer. The "potential" of malicious input and security threats is a ridiculous reason for closing this form. That's like not driving because there are "potential" bad drivers on the road that cause accidents.

    This reads like sour grapes. Not seeing as much participation as when first started is the nature of Internet engagement. It is not a good reason to close down a form.

  9. #9
    Join Date
    Jan 2016
    Location
    Vernon, BC
    Posts
    63

    Default Re: Prediction: Probable Forum Closure

    I do not recall upon joining, but at wonder if at the top of the "welcome" email there should be a strong emphasis placed that this forum works by peer input for newbies to TS...we need the seasoned TSrs to get vocal for this to work as Steve has mentioned. I wonder if there should be a required number of email notices members joining are consenting to receive...Ones that say monthly remind members that their peers are awaiting their help on the forum and their input is invaluable to the continuation of it? I really liked the email I got last that said, "We notice you haven't been active in a while, can we tempt you to return?" I used to get emails of recent posts come to me but maybe no one has done any recent posts thus no notice of any. I so extremely busy I understand others' position of being active on forums, but I'm just hoping there's a way for the forum to survive and thrive and be promoted globally. Sorry, I'm sure I'm jumping around in this post...I have things on the go ;)
    Last edited by ElleEm; August 2, 2017 at 03:27 PM.

  10. #10
    Join Date
    Aug 2006
    Location
    Ottawa
    Age
    33
    Posts
    77

    Default Re: Prediction: Probable Forum Closure

    This is very sad indeed. The support has helped many people.
    Would it be more beneficial to have a facebook support page? People check facebook on a daily basis and almost everyone these days has a facebook account. Just an idea. Or another social media resource could be used?
    Marisa

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