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Thread: A change is in the winds.

  1. #1
    Administrator/Community Manager David Hosobuchi's Avatar
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    Default A change is in the winds.

    Hi everyone,

    These past two weeks have been really crazy for me. Power was out for 48 hours; I was supposed to go to my retreat in the forests of Mendocino, Ca to install a new part to fix a pump, so we would have water for the winter. I stayed home and ate melting ice cream instead, and watched a Quentin Tarantino movie on my iPad by candlelight with my wife, as 70+ mph winds howled. That was 2 weeks ago. It seems my route was blocked by the Kincade Fire. The highways north from SF were closed. Hundreds of thousands of people had been evacuated from areas East of 101 from Geyserville, west to the pacific at Stuarts Point, south to Jenner..Wow. I waited until the next week to go to fix the problem with the pump. I was concerned about Mike, so I texted him to make sure he was ok. As I suspected, Mike was helping evacuated animals, but was safe.

    I have been busy with many things over the past year. My own health issues have been continually changing theses past few years. I have had some interesting and shocking surprises. Perhaps I should take the chance to share this with you in detail, if I get the time to hit the blogs.
    During this time I have also been spending a lot of it reflecting upon, researching BrainTalk Communities Inc., and thinking about everything that is, well, frankly broken. Really, I came up with the Nonprofit organization, and that perhaps we need a little attitude adjustments.

    As a healthy NPO, BTC Inc needed to be fixed. We cannot continually operate our online community, accept donations, unless our organization is perfectly in good standing with the Commonwealth of Massachusetts. Then, the next step would be to make sure this was ok with the IRS. Yes, but only until the end of tax year 2019. We need to get busy and refile now! It will be good until tax year 2022.
    We are making progress. 2020 should see a new year for BrainTalk.

    I have been working hard on a plan for a revival of BT for a while now. Though I feel that we, as a community, are ready to begin the first levels of preparation.

    As one who came here as a member, I know have done my best to never forget this perspective when looking at the community. Now as Directors of the community, I'd hope that you might think of Mike and myself not as "administrators" but more “ambassadors” if you will, doing our best in keeping your perspectives in mind for what is in the best interests of the community for all members, both current, and future, for a healthy neurological community of patients and caregivers, seeking peer support and information.
    As the community grows, we plan that new directors may be transitioned from our community to the board of directors, thus creating a more member weighted board of directors, and member run organization.
    Responsibilities of actually getting things done for BrainTalk Communities Inc may eventually fall upon us. The members. The ones that care about this community the most.
    I ask, who is going to run it the best? Those that observe and study it, or those that depend upon it?
    We the Members can become the so called "Powers that be."
    I originally volunteered back in 2002 as a BT epilepsy chatroom mod. Now look where I ended up.
    Well actually, I originally, like many others, flocked to BrainChat. I became a chatroom junkie thanks to BrainChat and fellow members back then. Those were fun times.

    I seem to also remember a time when the policy here at BrainTalk/BrainChat was to always evolve with the times. That policy has been neglected for too long. We need a boost to get us out of years of obsolescence. I am requesting that we budget for some extensive upgrades to bring us up to date.
    We will have our BrainChat back! A modern technology version of it. Perhaps a BrainTalk app for your tablet and phone sound nice?
    We will see what blows in.

    Please have patience, there's some official filings to be done. That stuff takes time.

    Once the filings are complete, and the NPO BrainTalk Communities, Inc. is 100% in good standing, and we are ready to move with everything,
    I will make another announcement regarding the status of the NPO, any relevant filings, and our next steps.
    Last edited by David Hosobuchi; 11-05-2019 at 01:19 PM. Reason: Power was out for longer than first noted!
    David Hosobuchi
    President/Director
    BrainTalk Communities Inc.

    "The Most Determined Win!"



  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Ambassador David)))))) ~

    Thank you so much for all you do for BT voluntarily and with such a good heart and intention. I do not take BT for granted, and I am grateful to you and Mike for keeping us viable.

    I hope members will speak up and voice their ideas and opinions about changes to BT. It's our beloved community, and we should all pick up a virtual hammer and nail to assist in building a new home.

    Right now, I'm looking for my hammer and nail, and all I can find is an old shoe and a tack. I'm old school, and in techno lingo, I'm "dial up." I don't do WiFi, or smart phones, or Facebook/social media. I just got an iPad not too long ago, and I'm still trying to figure it out. I'm content to just have BT as it is, so I can connect with all of our wonderful friends here.

    I never used BT's chatroom. I was very occupied with trying to respond to all of the posts in CN, and other forums, when BT was in full force in the early "aughts." But, if BT has a chatroom, I'll be there whenever I can.

    I look forward to your next announcement, and I hope that other members will weigh in with their thoughts to improve BT. We are small and intimate in some ways, which is a pleasant change for me at my age now, than the frenetic posting, when BT was peaking. Thousands of posts daily. I could never keep up with that now.

    Giving abundant thanks that you and your wife and Mike and the critters he rescued are safe. These fires are terrifying. We had three small (by comparison) fires in our city in one day last week, and it was nerve-wracking. I highly recommend using LED candles instead of burning candles during an outage. They are safer than burning candles (and just as romantic ).

    Bless you David and Mike for keeping BT afloat and thinking about our future.

    We love you!

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.


  3. #3
    Distinguished Community Member agate's Avatar
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    It's good to know that the people in charge are still thinking of us. Like Rose, I never used the chat room except that I did wander in once or twice but felt as if I was interrupting someone's conversation and left. My desktop computer runs Win 10, with Google Chrome as the browser. I have an iPad and a smartphone but use them only when I'm out somewhere, and that's not often.

    Or if I can't get online due to an iffy DSL connection, the iPad is handy.

    By an odd coincidence, I saw this thread just after noticing that I'd received an e-mail notification from BT giving links to several updated threads. I can't recall when I last saw one of these e-mails and had understood that they were no longer being sent. I"m so glad if they've been restored because getting an e-mail alerting people to new posts here will probably spark an interest in coming here and replying. Otherwise people have to click their way through to a bookmarked URL. Not so easy for a busy person or for one who's not feeling tiptop.

    Your power outage sounds like quite a nightmare. It's amazing that you've given any thought to BT at all under those circumstances. I'm sure everyone here realizes that this site is maintained thanks to your and Mike's good will and effort--and is grateful that it's still here, even after so many years of a sometimes rocky course.

    Just an update about the political discussion that I started as part of my blog here: It probably isn't going to attract many comments because the format isn't what people are used to. They can't start their own threads, and they'd need to keep looking into the blog while they're at BT--something they're not in the habit of doing. Maybe it will catch on as time goes by, or maybe a better solution can be found?
    Last edited by agate; 11-06-2019 at 06:11 PM.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.


  4. #4
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    First of all I do so much appreciate all that you and Mike do for BT. It has been and still is, in my opinion, a wonderful forum. I first came here in 1999 and it was booming. So fast paced that it was often hard to keep up because I was still able to work at that time and unable to devote as much attention. However, upon receiving a diagnosis which took me totally by surprise, I can't imagine what I would have done without BT. It was the people here who taught me to navigate the insurance maze in order to receive expensive medication for MS. They taught me about alternative things to try in addition to what the Doctor ordered. It didn't take long to figure out who to trust with advice they offered. I was and still am so grateful that BT is here.

    I did go into the chat room once or twice, but never figured it out. I remember one time someone saying something about I should speak up. I guess there was a way they could tell that someone had come on. Anyway, I think I was intimidated and didn't go back. I was very satisfied to remain on the forum as it is now. Now, through some leaving and a number dying we are getting small. I feel very close to the people who are on BT and do not mind the fact that we don't move quite so fast. Many of us have commented on the fact that we feel like family now.

    In spite of all this, if you and Mike decide to add a chat room again, I promise to give it a good and honest try. I have windows 10 on my computer and I use a smart phone.

    Thanks to you and Mike for keeping us here and for all the work you do for BT. When it has occasionally gone down I have been lost and always concerned that there was something so wrong that we would be unable to get back on line. I appreciate the work that it has taken to keep us here.

    So glad both you, your family and Mike and his fur kids survived the last fire.
    Virginia

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  6. #5
    Administrator/Community Manager David Hosobuchi's Avatar
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    I first came to BrainTalk sometime around 1999. I was simply looking for something on the internet to take the place of a real life epilepsy support group that I had founded with the help from the EFA, facilitated, and then eventually was forced to disband, due to the fact that I relocated away from the area.
    My first instinct was to go to the EFA site, and look to their forums and chats... Though at that time, even with multiple attempts, I found nobody there! Other epilepsy sites provided the same story. Zero people in their community. Then I stumbled across BT...

    The epilepsy chatroom was filled with literally hundreds of members, at whatever hour of the day or night that I popped in.
    It became obvious to me that part of the reason that no other (epilepsy) site had any traffic, was because they were all here at BT!
    Participation in the forums was even larger! Tens of thousands might be online at any one time.

    This type of dynamic, virile community, if kept healthy, and allowed to evolve and grow, can achieve awesome things together.

    I would like to impress upon everyone here that everything that I do for BT is also in my own best interests as a member. I will never lose that perspective!
    I want the old BT back just as much as I believe everyone else does.

    I say the most determined win.
    I am most determined, and am going to prove it.
    BT and its members will win.
    Doctors are too busy to run a nonprofit organization like BT. That's been proven.
    Time for the ones who care the most about BT to take over.

    Any volunteers want to help?

    Start thinking about that....

    We are going to need you in the future. :)

    Thanks everyone for your support. I really appreciate it. It's cold here, but this really warms me.
    I am having a great time in Boston. Every where I go, I am being hailed as an awesome guy when asked what I am doing in Boston. I am telling the BT story to everyone I meet.
    Upgrades and Outreach, will be the next step. I will be repeating the same principals that created BT all over again. This time all over social media, instead of the IRC channels.

    I should really sign off now. lots of stuff to get done before bed.
    Last edited by David Hosobuchi; 11-23-2019 at 08:58 PM.
    David Hosobuchi
    President/Director
    BrainTalk Communities Inc.

    "The Most Determined Win!"


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  8. #6
    Distinguished Community Member agate's Avatar
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    Time for the ones who care the most about BT to take over.

    Any volunteers want to help?

    Start thinking about that....

    We are going to need you in the future. :)
    I'll be happy to do anything I can to help keep this place going and to improve it. What kind of volunteering?
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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  10. #7
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    And I am in Boston but am not a computer whiz. If I can be of help, ask me.

    ANN
    There comes a time when silence is betrayal.- MLK

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