Tinnitus Week 2019 — We Will Donate $500 to Tinnitus Talk If Members Can Raise the Same Amount First

[Starthrower]

Please join me in a fund drive here for Tinnitus Talk's operational costs.
Listed at the bottom of this post are many of the countless hours, time and personal expenses that @Hazel, @Markku, @Steve, @TuxedoCat, @Jack Straw and many others have given to this board and its members.

Let's show our support for the upcoming Tinnitus Week (February 4-10) by donating to help pay for the costs of this board.

It would be so great if some of our blue members could donate something if possible. It would be great to see everyone's name in gold!! But it is understood that this is not possible for many people financially. That is okay let those of us who are able continue to keep Tinnitus Talk running for everyone and to show our appreciation for the big steps taken here to advance research, support and medical treatments for tinnitus sufferers.

If Tinnitus Talk members can raise up to $500 dollars, my husband and I will match that amount!!
Just let me know when this goal is reached. Maybe keep it going until the end of February?

Please join us in this fund drive!
Post in this thread if you donate!! You don't have to say the amount -- it is more important to be a part of this endeavor.

What they have done for us!
If you have not read the many, many different things they have done for us, the links below are just a part of what they have done on their own time outside of work and their personal lives.


Tinnitus Talk Podcast

We are extremely proud to be launching our new podcast series, under the same name as this forum: Tinnitus Talk. Please take a look here at our dedicated podcast page.

General Introduction

The podcast aims to inform, raise awareness, connect and entertain on all matters related to tinnitus. Our main focus will be interviews with both tinnitus experts and patients. We also aim to keep you updated on important news and developments in the field.

Our podcast host is @Jack Straw. He took the initiative to launch this series and has put immense time and effort into it. @Hazel and @Markku will be frequent contributors to the podcast.

Tinnitus Week 2019 — Our Plans

As you might know, Tinnitus Week 2019 is coming up. It's scheduled for 4-10 February.

Partner organisations are us (i.e. Tinnitus Hub), The British and American Tinnitus Associations, and the Tinnitus Research Initiative. Each organisation will have its own campaign around Tinnitus Week, but we'll also share each other's content on social media and such. The theme of this year's Tinnitus Week will be "Isolation." Check out the Tinnitus Week website for more information on what each organisation has planned.

This thread is intended to keep you up-to-date on our plans for the week, and how you can help.

Our Plan

We will use the outcomes of a survey we conducted last year during Tinnitus Week to spread awareness about the social impact of tinnitus.

On each of the seven days, we plan to distribute a nugget of data like: "1 in 4 tinnitus patients experience a lack of social support when struggling with their tinnitus." Each day's nugget will have its own thread here on the forum, to which we can link from social media. The idea is to generate more debate around the (potentially severe) social impact of tinnitus in its various forms.

We will supplement the above with some content submitted to us by several members, who have expressed their thoughts, feelings and experiences on how tinnitus has impacted them. However, even though we solicited your stories quite a while ago, we only received 2-3 submissions. If you want to make a last-minute submission, please PM me and @Markku as soon as possible!

The Tinnitus Euthanasia Story of Gaby Olthuis — Questions for Interview with Her Mother

All in all, I think it went well, considering that I had never done anything like this before. I had no idea how difficult doing an interview on camera would be. I am worried in retrospect that I made rookie mistakes like saying "uhuh" too much while the interviewee is talking. But the problem was there was no one there as set director; I had to do all of that myself as well, i.e. give instructions to the camera folks, decide when to pause or retake, decide on the right setting, what angles to shoot, etc. So essentially, I was doing two jobs, neither of which I have any experience at, all at once, whilst feeling quite stressed about the whole thing, to be honest.

[Danny Boy Memorial Fund] The Vote to Choose Our Preferred Research Beneficiary
@Ed209 created something so special in the memory of @Danny Boy. Tinnitus Talk worked hard and the BTA supported this cause by creating the first research-beneficiary from funds given by members and friends and family members.


Q&A: Tinnitus Hub Meets Neuromod (Lenire)

Finally, I would like to take this opportunity to acknowledge what a huge collaborative project this has been. Please spare a thought for the countless unpaid hours that went into creating this informative resource!

- @Steve took time out of his busy schedule to travel to Dublin to meet Neuromod;
- @Hazel spent 8h curating and structuring the interview questions, another few hours advising on video production, and will spend probably about 10h on the – yet to be created – sub-titles (volunteers are welcome!);
- I myself spent about 30h on video editing and production. It's definitely the biggest video project we ever did!
- @Ed209, @Jack Straw and @TuxedoCat functioned as our review panel, providing valuable feedback.

We hope you find this video useful and informative. If you do, please share the video on your social media and help get it out to more tinnitus patients!

 

[Deamon22]

Great idea, I am happy to contribute

 

[Ed209]

If Tinnitus Talk was a band, this would sell out in minutes!!

Nicely done, @Starthrower

 

[Deamon22]

Holy crap, that was fast Hopefully we can push this even further.

 

[Ed209]

Keep going everyone and let's see if we can smash over $2k!

Tinnitus Hub deserves so much more for all the time, energy, and sacrifice that they put into all of their advocacy work. Not to mention this very forum which provides a safe haven for people to hang out, talk, find support, and have a laugh.

 

[Jack Straw]

Everyone should be contributing to this!

 

[TuxedoCat]

Awesome response, you guys!

Nice work @Starthrower and incredibly generous of you and you husband. -TC

 

[Starthrower]

Oh my god... I thought I was still asleep when I looked at this thread and found our goal was reached in a day!!!

We are so very thankful to each and every person who can donate towards this fund drive. You guys made me cry and smile at the same time because we did so well on day one.

So we filled our promise.

But, let's keep this fund drive going, okay?

Maybe someone else wants to do a little match donation in this thread? Even a smaller goal is helpful. It is kinda fun if it is your first time doing this.

More so being a part of making Tinnitus Talk continue on for all of us.

Please donate, if possible, any amount.

But if it is financially impossible, we sure understand. This is where those of us who can donate do so for you people. Pay it forward.

Thank you all so far for giving to the Tinnitus Talk Fund Drive for Tinnitus Week.

Sincerely,

Jen (who has appreciation tears)

 

[Ed209]

Did I say $2k? Sorry that was a typo, I meant $3k

In all seriousness though, what an awesome thing to see: double the target in less than 24 hours! Obviously this includes Starthrower's very generous donation.

 

[TuxedoCat]

Maybe someone else wants to do a little match donation in this thread? Even a smaller goal is helpful. It is kinda fun if it is your first time doing this.

Well it is fun. This morning I popped over to see if anyone had donated to Dr. Rauschecker's fund and lo and behold someone, whose name I didn't recognize, had posted a $20 match.

Well I couldn't resist and got out my credit card and donated $20 which was now $40. Oh, and if it was someone from Tinnitus Talk who posted the match - Thank You!

 

[jimH]

@Starthrower,

Jen, this was a wonderful idea and very generous of you and your husband! Please convey our thanks and appreciation to him as well.

 

[Markku]

This hasn't gone unnoticed by us!

@Starthrower, you have my and all of our sincere gratitude for initiating this fund drive just before Tinnitus Week (by the way, for those who wonder, we didn't instigate this fund drive - it was all Jen's wonderful doing, the caring person she is). Send our warmest thanks to your husband, as well. What an unbelievably amazing human beings you two are, incredible couple.

All those who have thus far taken part in the fund drive, we thank you too. Each one of you. We know who you are, and we will not forget.

What impact does your contribution have?

There's more to running our work than meets the eye. We're not just a forum anymore. A few examples:

Just recently, @Hazel traveled to interview Joan van Baarle, the mother of Gaby Olthuis, the mother-of-two who chose euthanasia because of her unbearable tinnitus and hyperacusis.

Costs related to that interview were:

Expenses camera crew (lunch, transport, equipment) €194 EUR
Train Hazel (Amsterdam - the Hague) €25 EUR
Hotel Hazel (1 night, the Hague) €110 EUR
Gift for Joan €40 EUR
Memory card and postage to Finland €29 EUR
Total €398 EUR

This doesn't even take into account the amount of time Hazel spent preparing for the interview, emails and calls with Joan, soliciting and curating questions from Tinnitus Talk members, looking for a good-value camera crew, the filming day itself, etc. We're talking easily 30-40 hours of time spent. All of this went out of her pocket.

My part follows, where, in this case, I have to edit this interview with Hazel because I don't speak Dutch. We will easily spend 20-40 hours or more editing it (editing English material I can do by myself).

And if we want to promote the interview to a larger audience, for example, on Facebook, by running sponsored posts, that will not come free either.

We also incur costs like web hosting (we also host the Tinnitus Week website). Some of the related licenses have annual fees (such as certain forum and WordPress add-ons we use).

A couple of months ago we renewed our Survey Monkey subscription, which we use for our survey work. That costs £384 GBP per year. Yesterday we renewed our Vimeo subscription, that's £72 per year. We use Vimeo for embedding videos on Tinnitus Talk, as Vimeo doesn't have ads and is generally a better experience than YouTube.

Another example is the podcast; we use PodBean as our podcast host, which is a popular service for podcast series; it costs $108 per year (when paid annually, otherwise it's $14/month - we chose the annual plan to save money in the long-term).

If we want to create better quality interviews, for example when we attend the Tinnitus Research Initiative conference this May, we need better equipment and hence funds.

Now it's totally understandable, like Starthrower said, not everyone can donate, and that's perfectly fine and nobody needs to feel bad. Tinnitus can make a person jobless, isolated, and be left without hope.

What most people hopefully can do, is help promote what we do, on social media and elsewhere. Like sharing our just-released podcast with Dr. Josef Rauschecker.

It was March 2011 when Tinnitus Talk opened its doors, meaning we will have our 8-year anniversary soon. And I am feeling like we've got so much more to do, and with the people we have working for this cause (such as recently active ones @Hazel, @glynis, @Jack Straw, @Ed209, @TuxedoCat, to name a few) makes me think that we are able to provide more and more interesting content and activities in the future.

Thank you all for being a part of the community!

 

[Jack Straw]

Holy shit we have doubled it! Keep it going everyone!

 

[Greg Sacramento]

@Starthrower with all involved and Tinnitus Talk staff - nice job.

 

[Starthrower]

Thanks again.

I am so amazed we have raised so much for Tinnitus Talk's operational costs.

@Markku I am so glad you explained how much it costs (even though you guys never complain) to put out all the information and interviews by @Hazel and @Jack Straw and yourself. Not to forget our support board where I spend the majority of my time and the people who moderate the forums.

I am glad this resource is here for the new tinnitus sufferers. We support each other and fight on occasion but in the end we do come together for each other.

 

[Jiri]

Awesome initiative @Starthrower

 

[Starthrower]

Thanks again for each and every donation for Tinnitus Talk fund drive so we can always have this resource available to all of us and the new members.

I remember when I first joined and started posting (it took me a while) and @glynis was not yet a moderator but she was always there for each poster. And she was in the hospital for something quite serious but still checked in on Tinnitus Talk. Then I remember how she would call and talk to people stressed out. And I remember she mentioned she donated monthly to Tinnitus Talk.

So hopefully our donations will continue and also be a tribute to @glynis. I know she is going through a difficult time now and I am sure she would feel appreciated if we can get more donations. It doesn't matter how much because knowing what you did made a difference really means a lot.

Wow. We are doing great so far. This is a lot of money so far. Thanks again.

 

[Vicki14]

Post in this thread if you donate!! You don't have to say the amount -- it is more important to be a part of this endeavor.

Donation made!! Well done @Starthrower! What a very kind and generous thing to do!! Xx

 

[Starthrower]

Donation made!!

@Vicki14 your generosity is very much appreciated. Thank you so much.

 

[glynis]

@Starthrower,
Thank you for your lovely words.
Well done for getting this fund going and making a massive donation. xxx

 

[Deamon22]

Hopefully we can push this over $1,500!

 

[Ed209]

Hopefully we can push this over $1,500!

It seems you have made a typo there, Deamon I believe you meant to say over $2k

 

[Deamon22]

It seems you have made a typo there, Deamon I believe you meant to say over $2k

Hahah yeah, my bad

 

[Starthrower]

Cool so far to have raised this money for our Tinnitus Talk!

I wonder if let's see... maybe 10 new or 5 members who haven't donated as of yet on the forum would donate $5.00?

Believe it or not this community effort will bring about awareness especially during Tinnitus Week this month.

I remember years ago doing a program with the ATA and many outsiders were astounded with how the program grew by simple donations from tinnitus people and a few professionals in the hearing community.

Here is a short personal journal entry I wrote early this morning:

Sometimes… I am afraid of what to say or what not to say. Sharing a part of my soul isn't easy because I have been knocked down so many times and it hurts to the core of my heart making me retreat further away from this tinnitus world.

People may wonder why my profile remains closed for any off board communication with people. I had to make a choice and set boundaries. It is the only way I could reenter this tinnitus support world after years of being pretty much living by imposing self- isolation.

Self-Isolation. Strange this would be the subject of Tinnitus Week. I am sitting here in the early morning writing this out not knowing if I will copy and paste it here. Guess we will find that out later on.

Is it possible to leave everything tinnitus related and move on? Is it necessary when a person achieves some sort of normal life again after struggling with tinnitus?

We just disappear….that percentage of people suffering - and tinnitus organizations then claim most get better and move on or it simply does not bother them?

I cringe.

 

[Samir]

I donated $10 for the fundraiser and I donated $10 earlier today. Now I'm off to donate some to prof. Rauschecker's research fundraiser. I'm on a donation spree right now.

 

[Samir]

I saw a nice little calendar on an office desk today with a lot of interesting proverbs. In Swedish... of course. The proverb of the day (1 February) was the following.

"Det bästa sättet att få något gjort är att göra det."

This literally translates into following.

The best way to get something done is to do it.

So... "just do it"!

To tell you the truth I no longer try too hard to persuade other people to do the right thing. I chose to do rather than just talk about it. So when I see a call for donations for something I care about, I just do it. I am better off now financially so I don't mind chipping in whenever and wherever I have a chance to contribute to something good.

 

[OnceUponaTime]

Fantastic idea!

@Starthrower Thank you and your husband for your contribution!

I know every penny will be used wisely by the Tinnitus Talk staff.

Happy to be a part of this group... family.

Once...

 

[Hazel]

This is truly amazing, and I want to thank you again @Starthrower for this wonderful initiative!

I also just want to reiterate that Tinnitus Talk is 100% volunteer driven and we operate on a near zero budget. This money alone will triple or quadruple our budget for 2019 and save us from paying costs out of our own pockets (as did happen quite a bit in 2018).

This funding will cover our Survey Monkey subscription, the podcast costs for the whole year, and probably one or two other projects thrown in as well!

The costs we're making for Tinnitus Week are actually very limited, it's mostly just our labour (a few hundred hours?). But there is the cost for the Tinnitus Week website domain and hosting, so glad we got that covered too!

 

[Starthrower]

Tinnitus Talk is 100% volunteer driven and we operate on a near zero budget.

I found this site after years of staying away from support for tinnitus in any way, shape of form. I thought it was the only way to protect myself and move forward with life. I thought I had to "forget" the past and all the pain.

But the screeching brakes inside my head never agreed with my choice. Nor did my husband.

Thank you @OnceUponaTime!! Love your avatar, it goes with your user name. And @Samir... You got me now doing the chat thing.

If we can raise enough money for this year I know @Hazel and @Markku will be able to continue working for us and keep this resource open.

I still have that video @Hazel and @Steve did in my mind. When something like that stays with me I know it was done right.

This is so much more than I expected everyone... Hope we can get or exceed our goal for Tinnitus Talk.

I may do more personal journal stuff. Have to go change my husband's bandages... He was so happy when I showed this thread to him.

 

[Starthrower]

The costs we're making for Tinnitus Week are actually very limited, it's mostly just our labour (a few hundred hours?). But there is the cost for the Tinnitus Week website domain and hosting, so glad we got that covered too!

@Hazel thank you and @Markku because doing the above did take time and money you did not have. So glad this fund drive will help out.

I hope we can get to the goal during Tinnitus Week.