[Danny Boy Memorial Fund] The Vote Result and a Discussion on How to Implement It

Discussion in 'Awareness & Fundraising' started by Ed209, Sep 24, 2018.

    1. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @Ed209 @David

      We have to put together a "Mini-Grant" or "Student-Grant " Call for Proposals. It may help to facilitate the discussion if BTA have a template or sample that we can look at. -TC
       
      • Like Like x 1
    2. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      This is very exciting for me. Something so new from the tinnitus community (and friends) in Danny's memory. Thank you @Ed209.

      When I was a struggling college upper grad student this amount of money would have meant the world to me.
       
      • Agree Agree x 4
      • Like Like x 1
    3. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I lifted an example of a "call" from the internet and modified it based on things that have been previously discussed on the forum. The first draft is attached below. It's rough but can be used as is for a Straw Man. Anyone is welcome to make constructive criticisms or suggest additions/corrections/deletions. There is no pride in ownership, this is a team effort. I would, however, strongly suggest to @Ed209 that each voting member that contributed to the fund be shown the final draft and give an OK. Everyone is part of the process, there can be no criticisms later, only learnings.

      I've never done this in an online forum, it might lend itself to a Wiki if that sort of thing is still done. If @Ed209, @David or anyone else have something else in mind we can always ditch this. -TC
       

      Attached Files:

      • Like Like x 2
    4. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Sorry TC, I missed this as it was buried under a load of other notifications.

      That’s a great help and is really appreciated. As this is not directly my field of expertise, what are everybody else’s thoughts on this draft?

      Again, thanks for the positive involvement; it goes a long way when we all pull together.
       
    5. Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      Great news @Ed209, thanks for the update.

      Everyone please remember you can still contribute to the fund.
       
      • Like Like x 2
    6. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      I've attached a form that we've used for small grants in the past (up to £3-5k dependent) is attached.

      The conditions we attached were:

      · 75% of the grant to be paid on the receipt of: a signed copy of this letter (which stipulates the conditions below along with the grant form that forms the contract) and a satisfactory invoice from
      · The final 25% to be paid upon satisfactory completion of the project and submission of a final report and précis
      · A final report submitted on the form attached and 1,000 word précis to be submitted to the BTA for publication online and in Quiet
      · BTA to be immediately informed of any changes to the personnel, timescale or plan of investigation. The BTA reserves the right to review the grant in the event of any significant change to the project.

      We wouldn't usually expect a journal article from these sorts of projects, as often they were used as seed funding for larger projects. That could be changed for this project. Although it would probably be a low impact journal or industry publication (e.g. ENT & Audiology News), a peer reviewed article may be a challenge to get accepted.

      If it is decided publication should be open access, in a journal (so everyone can view it) expect to add ~£800 to the price tag. Although some institutions will cover this.

      We'd need to add clear criteria that any applications would be shared publicly here and that funding would be allocated via a public vote. I think the easiest way would be to share a lay summary and total budget - think that would be attractive to those including salaries in the project.

      It will also help with applications if it's stated what the total pot is, the maximum award value and how many awards will be made.
       

      Attached Files:

      • Like Like x 2
      • Informative Informative x 1
    7. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Hopefully we have open access for all scientific papers in 2020.

      If the award were to support - or go towards supporting - a student, do you have figures on the cost to do this for a PhD? This should get at least one paper and also have the biggest potential impact. Although I'm sure it comes at a high cost.
       
    8. kelpiemsp
      Swamped

      kelpiemsp Member Benefactor Advocate

      Location:
      United States
      Tinnitus Since:
      birth/ recent spike 2/2018
      Cause of Tinnitus:
      Born with ETD, several acoustic traumas, most recently ETD
      One thing to consider is that the cost of publishing is usually linked to prestige of the journal. Very general rule, but if we are looking at a publication cost in the thousands... the results are probably pretty good :) However, if it is used to help a thesis the costs should be covered by the university.
       
      • Like Like x 1
      • Agree Agree x 1
    9. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      A PhD costs approx £75k to fully support over 3-5 years.
       
      • Like Like x 1
    10. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      So what’s the current feeling amongst us all? Are we doing a single grant/award with the possibility of a published paper at the end?
       
      • Good Question Good Question x 1
    11. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Thanks @David. Today I'm going to my, first ever, tinnitus support group meeting. The meeting is located an hour's drive from my home-- it will take the better part of today to attend the meeting and get there and back. Tomorrow, I can give my full attention to this and will try to harmonize the Call with the Application and incorporate your comments. I will post an update at the end of the day- keep in mind that I'm in the US so there is a 5hr time difference from the UK.

      Thanks, TC
       
      • Like Like x 2
    12. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Good luck! Hope the meeting is worthwhile for you.
       
      • Like Like x 1
      • Agree Agree x 1
    13. Rajin

      Rajin Member Benefactor

      Location:
      PA
      Tinnitus Since:
      9/7/17
      Cause of Tinnitus:
      Hearing loss ,noise
      Thank you @Ed209, you are doing so much. We appreciate all the hard work you have done. It takes a lot of your time to do what you are doing.
       
      • Agree Agree x 1
      • Friendly Friendly x 1
    14. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Is it worth compiling a list of researchers to approach about conducting a project?

      We could contact them and suggest the type of work that interests the donors, get some agreements, then present some suggested projects. This can then be presented and voted on.

      The usual way would be to send out a call but in this instance I think that there will be strong feelings about the type of research and what it will contribute that will shape the people that are approached.
       
      • Good Question Good Question x 1
    15. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I’m open to all ideas, Steve, and will go along with whatever the community decides is the best course of action.

      By putting out a call, we are essentially casting a net into the wider world, which may bring in some talented, eager, individuals. An uncorrupted mind can often bring new ideas. Also, is this option likely to be cheaper or more cost effective?

      However, if we headhunt someone in particular we will have better advanced knowledge of what that person is capable of, but does this come with further challenges, such as convincing them to take on a project proposed by us? Would this likely cost more as well, or be less cost effective?

      This is not my field of expertise, so I’m just throwing this out there. Please correct me if I’m wrong. I like both ideas and can see pros and cons to both, albeit, with my limited knowledge of the intricacies of research funding.
       
    16. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      Good points @Ed209 I also think both ways have their benefits.

      Maybe the first step is to narrow down on the type of project for the call, look at the most interesting current types of project that could achieve good results?
       
    17. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      We also need to think about timescales. How much longer do we plan to raise funds for? And secondly, when are we going to start the process of putting this out there. Having some dates in mind can really help.

      Are there any points in the year that are better for putting out a call, or does it really not matter? Something that crossed my mind is that we could make this coincide with Tinnitus Week.

      I hope that we can go above £5k.
       
      • Agree Agree x 1
    18. Steve
      Creative

      Steve Member Benefactor Hall of Fame Advocate

      Location:
      Sheffield, UK
      Tinnitus Since:
      2003
      Cause of Tinnitus:
      Flu, Noise-induced, Jaw trauma
      That's a very good idea, which could really build the fund. There is a lot of publicity at that time of year, I can imagine there being good feedback and interest in donating.

      The challenge then would be in having something very developed, probably with expressions of interest, that appeals to the community as a whole, which could maybe be voted on by donors during the week for final decision at the end of the week. And also working out what more could be done with additional funds, so maybe a scaleable project or funding of a secondary project if funds get that high.
       
      • Agree Agree x 2
    19. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      @Ed209, @Steve,

      Tinnitus Week would be a great launch for Daniel's fund.

      I hope more people would give feedback for the Talking Tinnitus Expo and also join in Tinnitus Week 2019 to make it even better than last year.

      @Steve, @Markku, let me know if I can help in anyway regarding next year's Tinnitus Week and if we can do anything getting together as a group.

      love glynis
       
      • Like Like x 3
    20. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I'm not sure that putting out a call and inviting certain candidates to apply are mutually exclusive. Doing both seems to leave all options open. I recognize that this is about Danny, though we should try to achieve as much exposure as possible for the fact that the tinnitus community has come together to support a research project towards a cure. Hopefully that will send a message to the research community that a cure is needed and also provide reinforcement within the community that we can come together to do things and it can show that we can work with BTA to advance a cure message, which has been a past point of contention.

      Is there a cost associated with putting out a call? If we decide to do a call, we need some guidance from @David about the length of time between putting the call out and the deadline for submission.

      Timing the selection and award around tinnitus week is a great idea. I'll just express that I'm a little skeptical about continued fundraising- asking over and over again may reach a point of diminishing returns. And just leaving the GoFundMe sit there makes the appeal look old and ineffective. Plus those who have already donated can become impatient because they want to see evidence that their donation is making a difference. Those are just my thoughts doesn't mean it will become a reality. Maybe someone knows how to avoid all of that from happening.

      TC
       
      • Agree Agree x 1
    21. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      Ok, let’s start making some decisions then because we are pulling in various directions and nothing concrete is being decided.

      • Who wants to put out a call and see what response we get?

      • Who wants to propose a project idea/s to a list of scientists selected by us?


      On the fundraising front, I will keep going behind the scenes, until we hit at least £5k. Hopefully more. In my opinion, we should be building the fund from here now that we have a plan about what to do with it. It’s an opportunity to seek unique eyes who haven’t seen the campaign yet; only now we have a clear aim. Let’s not forget, we have only been doing it for two months. That’s not a particularly long time.

      Once everything is set in place we can cease fundraising and move onto implementing our goal.
       
      • Agree Agree x 1
    22. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Would contacting hospitals whom specialise in Tinnitus be good as I'm sure they will have graduates training with them who would be interested in applying for funding to progress and specialize in research and so on.

      I'm happy look into contacting
      Royal Stoke University Hospital
      Also contact head of Audiology and so on.
       
    23. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      No cost in doing so. I'd give it a couple of months minimum. Maybe to the end of the year, make the decision by a vote in January and announce in Tinnitus Week?

      If you go for this, happy for the BTA to administer it, can have a page on our website with the details and application form. Folk can then raise awareness of it with their favourtie research teams, etc. If you decide on this will need to know timelines (see above), agreed application form (think @TuxedoCat was looking at this) and a theme for the call...if any.
      May need criteria too, such as what level of student could qualify? I'd reckon Masters and PhD students. If you don't make this sort of disctinction then you may run the risk of getting non-students applying, which isn't the purpose of the award. Also ask how it will add value to their studies (e.g. check you're not paying for something already funded).
      All of these are suggestions, based on how we've done this in the past, nothing more!

      Sure there's other points that would need covering that haven't been thought about yet either.

      (Acting as a critical friend) If you go for this, I think you'd need to be clear on how it fits with the 'Student Scholarship,' idea. It's not enitrely clear in my mind. I think if you do this it would be important to make sure they all submit the same information (e.g. an application form ) so an equitable decision can be made.

      If I had a vote (And I don't!) I'd suggest you do both! Go with the call but have a list of people you want to advertise the call to, to ensure they see it and submit applications - if they have a student that fits the bill and has a project.

      It might be worth defining what's meant by 'Student Scholarship,' too. In the UK that would generally mean helping to fund studies. I'm not sure that's entirely what's meant here. Sorry to throw more questions in but these points are better ironed out now than later.
       
      • Like Like x 1
      • Agree Agree x 1
      • Informative Informative x 1
    24. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      I agree, which is why I said we are pulling in various directions. We need to be firm in our decisions and I’m going to say my vote is to put out a call because, as you rightly pointed out, it’s in keeping with what people voted for.
       
    25. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      Here is a list of a 1000 hearing and tinnitus published articles written by researchers and by academic students. Under People is more information with number of papers written by each. There's also other sites that list tinnitus, hearing and hyperacusis articles and research papers by students.

      Maybe you can find good academic students from lists such as this one.

      http://www.academia.edu/Documents/in/Tinnitus
       
    26. glynis
      Feminine

      glynis Manager Staff Benefactor Ambassador Hall of Fame Advocate

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      • Like Like x 1
    27. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      With that being said, I was doing some digging last night to look into the projects that Cambridge University are currently doing, as I know they have a hearing research centre, and am aware of David Baguley’s involvement.

      My wife is a CU graduate and was involved in a hearing study (totally unrelated to her work) but it got me thinking last night that she has access to the Cambridge Core which has over a million journal articles and over 30,000 books from Cambridge University Press. It’s a central hub for academic research only available to alumni and former postdocs. However, we couldn’t get on as she couldn’t remember her password :facepalm:. I wanted to see what tinnitus research had been done there and read some of the articles.
       
      • Like Like x 1
    28. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Have to say it's the first time I've seen this sort of complex decision done via a forum, won't be easy to gain consensus and have one coherent direction. I applaud the effort though!
       
      • Like Like x 3
    29. AUTHOR
      AUTHOR
      Ed209

      Ed209 Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      We will make it happen, David (y).
       
      • Winner Winner x 2
    30. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Pubmed's a good place to start, tends to be what most academics use to base reivews on (from what I can tell); https://www.ncbi.nlm.nih.gov/pubmed/

      We (well, David Baguley!) did an analysis of the number of published papers on tinnitus for our Annual Tinnitus Research Review in 2016;
      upload_2018-9-28_16-41-37.png

      Although volume doesn't necessarily equal quality of course.

      I'd really recommend reading the BTA research reviews as good overviews of recent research by topic areas. They're fully referenced so you can find papers you're really interested in from there.
       
      • Like Like x 2

Share This Page

Loading...