Announcement Updates and News Related to the Tinnitus Hub

Discussion in 'Announcements & Feedback' started by awbw8, Oct 16, 2015.

tinnitus forum
    1. awbw8
      Balanced

      awbw8 Member Benefactor

      Tinnitus Since:
      04/2013
      Dear Tinnitus Talk Members and Visitors,

      Not all of you may know me, I’m a fairly new staff member here, but I’ve been a visitor or member of Tinnitus Talk since spring 2013 when tinnitus entered my life. A short while ago, Markku, Steve and the staff asked me if I would be willing to help them as a staff member and moderator here. Since accepting their request, I’ve learned a great deal about what goes into the forum behind the scenes and I felt like a letter to my fellow members might be a good place to start, so everyone can really feel included in what Markku and Steve are working so hard to create.

      Recently, a few members have reached out to us looking for updates on the Tinnitus Hub, or with other concerns related to the Hub or direction of the forum. These are concerns that I had and have as a member, too. We realized we have been remiss in offering updates as we get caught up in the work here and Steve and Markku don’t always have time to do all they want to. So I’m going to try and help support them with this update letter below compiled from my experience and the staff's collective knowledge. So, without further ado, please browse the updates and notes below. If you have any questions, concerns, suggestions etc. please know that the entire staff welcomes and wants help and feedback on all issues related to Tinnitus Talk or the Tinnitus Hub. We are only human, but in our hearts we are trying to serve our community and make the world better for those with tinnitus. We all have it, we know how awful it is and that’s what’s driven us to work for this cause. Thank you for going on this journey with us, and being our members, our teachers and our inspiration.


      Tinnitus Hub Funding and Timeline:


      The Tinnitus Hub is the culmination of years of work. We are really excited about this leap into a full-scale tinnitus resource. Tinnitus Talk, the beating heart, will remain, we will just be merging it with the new site, to make for a larger, more organized experience on the whole.

      As many of you know, we ran our crowdfunding campaign in the spring of 2014, a little over a year ago. We raised $12,793 by 219 different contributors via the campaign. Approximately $11,000 was left over after campaign processing, payment and currency conversion fees. Through our sponsorship with Auris Medical, we have secured €8,000 (about $9,100). Additionally, we have gotten around $1,100 from members becoming Benefactors (campaign contributors were also upgraded to Benefactors). We have incurred running costs, Tinnitus Talk's server and software license fees, and advertising fees (one of the recent advertising campaigns was a push for tinnitus awareness in the form of our Sounds of Tinnitus video). All this in mind, we have been able to budget $18,500 for the initial development of the Tinnitus Hub. We do not presently have a financial allocation report, as (you will learn more below) we had to re-scout an appropriate web developer for Tinnitus Hub. Once we have allocated funds, we will share a public report. In the interim, please note that all Tinnitus Talk staff are unpaid volunteers donating our time to organize this project and using the full funds available towards the implementation of the Hub with no funds going towards any sort of personal salary.

      As some may remember, originally our plan was to get the new website launched during the fall of 2014. Unfortunately, varying circumstances have prevented us from meeting this goal. Let's take a look at them:

      1. First, our initial brief ("the features we want for the new site") was too complex and technical. There is no shame in admitting that and we have learned a great deal in the years since starting Tinnitus Talk. This has also been a lesson. Our budget came in the way: most quotes we received in the summer of 2014 were around $30,000, one was close to $100,000. After a lot of trial and error and one failed experience of hiring a developer, even after we managed to amend our brief to make it more realistic for our budget, we found it quite hard to find a development company or individual who is a) is in within our budget and b) has the expertise that we require (e.g. integrating two platforms). However, we have found a promising development team that might fit the bill. We will keep you updated on that. And if you might have any other recommendations for developers, please send us a message.

      2. The team has changed over the years, and also over the year. Just as the board itself is fluid, so, too, are our moderators as they move into different stages of their lives. They are volunteers and we wish them only the best when they are ready to move on. However, this leaves Markku and Steve, the constants, with a lot to handle. Tinnitus Talk has grown an enormous amount since it was founded in 2011, to over 150,000 unique visitors every month. This has given us good attention, in the form of a broader user base for varied support and opinions and mutually beneficial sponsorships to help further our goals, but it has also lead to a need for more moderation and issues that are normally kept from the member base as our members are already dealing with enough in the form of tinnitus. However, we feel it may be best to be as transparent as possible, for members who have been with us an extended period of time and are invested in our success. Over the last 6 months, Markku and Steve have been involved in a protracted legal battle with a company (which we hope to name later) which took issue at its product being labeled ineffective on TinnitusTalk. Thankfully, a UK law firm has represented Tinnitus Talk on a pro bono basis and after 6 months it appears the battle is nearing an end. However, this has caused both Steve and Markku, who have invested hundreds and hundreds of hours in researching varying laws, working with lawyers and carefully moderating the forum on the topic in the interim, an enormous amount of time and emotional stress. At the same time, they are both unpaid for their work here, they are trying to manage the Tinnitus Hub and also have their own jobs, families and companies on the side. Additionally, they moderate the forum and respond to many, many emails a day. Some of which, unfortunately, are very rude, laced with insults, profanity and personal attacks on themselves, their character and motives, the forum, its content and its management.

      I am very new to the staff, and I want to say that neither Markku nor Steve asked me to write this paragraph or even this letter. I have not always agreed with every moderation or leadership decision here, but I think we can all join to make it better with open, respectful dialogue. I do, however, think it’s important to remember this forum is managed at its core by just two people who really, truly care deeply about this community. They are only human, so I hope we can all keep that in mind when frustrations occur or missteps are taken.


      Tinnitus Hub Mock-ups:

      Please let us know what you think, suggestions for improvements or comments are more than welcome!

      This is how our front page will most likely look like (not yet mobile-optimized):
      http://data.tinnitustalk.com/v3/visual/t-hub/4/alt1.htm

      This is how our forum view might be:
      http://data.tinnitustalk.com/v2/visual/t-hub/3/forum-home.htm

      This is the thread listing view:
      http://data.tinnitustalk.com/v2/visual/t-hub/3/forum-threads.htm

      And this is the single thread view:
      http://data.tinnitustalk.com/v2/visual/t-hub/3/forum-details.htm


      Tinnitus Hub, the organization:

      Tinnitus Hub is now an entity limited by guarantee, registered in the UK. We are, in essence operating as the equivalent of a non-profit organization (for US readers – please note that we are NOT a non-profit in the US at this time, but are looking into this), but with some freedoms that will benefit us as we hope to grow. We are a company limited by guarantee (no shares or profits for staff members), with a charitable mission. We are also planning to register as a Social Enterprise in the future. In the UK, many nonprofit companies are incorporated as a company limited by guarantee. This means that the company does not have shares or shareholders. The profits of the company (also referred to as the trading surplus) must be invested in achieving these goals and not distributed to the company's members. Of course, the matter has more details than we are including here for sake of brevity, but questions are more than welcome for those interested.

      Our Memorandum of Association (which is officially registered with the Companies House in the UK) states:

      Company mission:
      The company has been formed to offer support, guidance, and other resources to those suffering with tinnitus. The company aims to raise awareness, help people through difficult times and play a part in the search for a cure.

      Not for private gain:
      The company is not established or conducted for private gain. Any profits or assets are to be used to support the company's ability to undertake its mission.

      Asset lock:
      The profits of the company will be held within the business, to be used to fund:
      a) The on-going provision of services and resources consistent with the company mission
      b) Continual improvement of the company's offering
      c) Tinnitus research projects
      d) Other internal or external projects supporting those suffering from tinnitus


      Future Plans

      We are still hoping to launch Tinnitus Hub before March 2016, when the next Tinnitus Research Initiative conference is held. As we have seen, things come up that we cannot anticipate, especially when our team is so very small, and we have other full-time jobs outside of work on Tinnitus Talk. So, we do not want to offer a hard promise, but unless something extraordinary happens, our new goal is to launch the Tinnitus Hub will in early to mid 2016.

      In any case, we will now be offering more regular updates on the progress of the Hub, and if you ever want to know the status, please do reach out to the staff.


      Can You Help?

      If you have some specific knowledge or experience around complex website projects or programming languages such as PHP, HTML5, JavaScript, CSS3 or graphic designing etc., please get in touch with us.

      If you just want to offer your feedback on the user experience of the new website, be a beta tester, give us suggestions for improvements and changes, please do get in touch with us. We will add you to a group that will be asked to do just this.


      Follow Our Progress

      We thank you for being such stellar and supportive members. We would never have started on this journey without your support. If you have any questions, comments or concerns about what you have read here (or anything else) please do reach out to us.


      Very Sincerely,
      awbw8 (and the whole staff team at Tinnitus Talk)


      *edit: We plan to update this post as new news become available, presently no updates have occurred quickly enough to warrant a monthly update. If you have any questions, please reach out to the staff. - TT Staff
       
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    2. Atavian

      Atavian Member

      Location:
      Valdosta, Georgia
      Tinnitus Since:
      05/2014
      I love how the new forum home looks!

      Improvement idea: I would, maybe, shrink the top parts of the site in order to maximize the space for the forum categories.
       
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