I was wondering if there are any updates regarding future plans for this year, funding status, etc.
Every now and then, it pops into my head that a social media strategy could really help boost awareness and funding.
For now, I have noticed that the Facebook and YouTube accounts have a very limited amount of content and subscribers. For example, the latest updates regarding the Q&A cannot be found on the Facebook page. Something as simple as a monthly update across different social media platforms could make a small but meaningful difference. When current subscribers like or share posts, it can potentially generate new visibility among their own friends. I am not sure if there is a content creator or social media expert around who could look into this, but I think it would be worth exploring.
Another idea, though I am not sure if it is feasible, is that people tend to donate more willingly when they feel they have already received value from the organization. This is the principle behind platforms like Patreon. I know there are already podcasts hosted on Tinnitus Talk, but I wonder if similar content, such as discussions about tinnitus theories and research avenues, could be shared on the YouTube channel. The goal would be to educate and engage people while also increasing visibility. However, I realize this could become a lot of work, and for it to be sustainable without distracting from the main goal of advancing research, it would likely require additional volunteers who are passionate about contributing.
I hope I do not sound too pushy. I truly just want this initiative to succeed and gain as much momentum as possible. I am a bit concerned about the feasibility of everything if there is not a coordinated effort to spread the word. The more visibility and funding this receives, the stronger the message it sends: "This is important. This is something we want." That message could reach not only the broader community but also major pharmaceutical companies that might see an opportunity to invest in a solution. A strong funding and awareness push could create a snowball effect, leading to real progress.
Thank you again for launching this initiative in the first place!
Thanks for caring and wanting us to succeed! Yes, we are keenly aware of the importance of social media. We have posted quite a few shorts on Instagram, and some of them have gotten up to 300,000 views. I'd say that's a pretty stellar result for a non-profit run mostly on volunteer power that has existed for less than a year
But one must also take into account that tinnitus is a VERY difficult topic to raise awareness for. You're literally competing with cute puppies and kittens, flashy influences, and all kinds of other stuff that tends to excite people a lot more than tinnitus research. And we have hard evidence (happy to tell you more if you want, but basically, this is data from campaigns we've done) that for every 1000 tinnitus sufferers you reach, less than 1 of them will like, share, donate, etc., if you're lucky. People are jaded, don't trust anyone, don't want to be reminded of their tinnitus, or they just expect someone else to come up with the solution, without any effort from their side. That might sound harsh, but it's the reality when it comes to tinnitus.
It takes time to build an audience. It takes time to build trust. We cannot focus on all social media channels at once (Instagram, YouTube, Twitter, LinkedIn, Facebook, TikTok, etc.) because it takes time to get to get acquainted with any specific channel, as each has its own video format, algorithm, style, etc. So, our approach has been, for now, to focus on Instagram and add more and more channels over time while we build our experience and expertise. We are taking a very considered approach, it just takes time, and that's normal for a tiny organization like ours. Patience and persistence are key, and it's not realistic to expect immense social media success in such a short time with such limited resources.
Our main challenge is the lack of manpower. We have a small core team of 4-5 people working on this, in addition to other jobs and responsibilities. No one is full-time. Social media responsibilities are shared between myself, Markku, and Jack. But we each have other responsibilities as well (I, for instance, do admin, finance, responding to incoming mail, project management, donor communication, researcher communication, events organization, coordination of the grants program, and more).
We simply don't have the budget to pay for a full-time social media expert, which is what it would take to very quickly generate the kind of exposure you are talking about. If you know anyone -- and I mean someone really good, who also understands tinnitus, research, and the non-profit world -- who would help out for free or at a vastly reduced rate, we'd be much obliged. But, of course, finding someone like that is a needle in a haystack.
But again, I would say we're actually doing really well for such a young organization run on a shoestring budget. We are extremely confident that we're making major progress, and every week is better than the last. We have some very exciting news coming up on various fronts soon, including something that could make a huge blast on social media.
And regarding your idea to share discussions about research avenues and tinnitus theories, this is exactly what we've been doing with the Q&A events we're organized; there were 6 so far, and we'll have more this year. We're also discussing a potential video project with Dan Polley to cover the basics of tinnitus science. But as you point out, all these things cost a lot of time. I think often people don't realize that a one-hour Q&A video represents over 50 hours of work behind the scenes. There's a lot of back-and-forth with researchers/guests around scheduling, helping them prepare both technically and content-wise, event registration, marketing, video editing, writing video descriptions, creating thumbnails, uploading... you get the idea.
By the way, one thing that has become abundantly clear already is that no matter how good your social media is, the REAL donations will come from high-net-worth individuals. And finding them -- while it could theoretically happen through social media -- in practice we have experienced success in this area through other networking techniques that have nothing to do with social media. So far, over 90% of our donations have come from very wealthy individuals, and we believe this will continue to be the case. So, while we very much recognize the importance of social media, it's not the only aspect of a successful fundraising strategy, nor arguably even the most important.
This feels like perhaps an unnecessarily long reply, but I wanted to take this opportunity to make a few things clear, because we do get this type of comment a lot. Just like we get a message or email every other day asking, "Why don't you just get celebrity X to support the cause?". It's obviously not that simple, as A-list celebrities get a million emails per day and can basically only be reached through personal connections. That's why we've been working hard on getting some lesser-known but still very well-respected artists on camera. You can see these videos on the Stories page of our website. By approaching it this way, we build recognition and respect, so that if and when we do get a direct line to an A-lister, they'll be much more likely to say yes.
It's a game of patience, persistence, and professionalism that we're trying to play. We're probably not doing it perfectly, but I'm extremely proud of how much we've been able to achieve with limited time and resources, and I'm very confident that we will be successful in our endeavour to improve the lives of all tinnitus sufferers.
By the way, if you really want to help out, you're always welcome to volunteer, depending of course on what skills you have to offer. We're constantly looking for committed volunteers. We've been thinking for instance of creating a 'digital street team' of people who will share our content all around the internet.
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