- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
Too many people are left alone to suffer in 'silence' with their tinnitus. You all know this, of course, but the trouble is convincing the rest of the world that tinnitus is a serious problem that deserves serious attention and funding, a problem that requires more than just behavioral therapies, but a real solution. We are very excited to announce a new initiative to break through these obstacles.
But first, let's set the scene...
Background
For years, we at Tinnitus Hub have been tackling the problem of tinnitus in our own little way. By connecting you guys through Tinnitus Talk and providing a platform to share your troubles, ideas, and news. By being your voice at research conferences. By collecting data for research. By creating the Tinnitus Talk Podcast and other content to keep you updated on the latest developments.
All along, we've been acutely aware of the shortcomings of our approach, of the limitations to what we can achieve on a shoestring budget with a few volunteers. Countless times, we've been asked "can't you guys get celebrities to raise awareness?" or "can't you raise funds for research into a cure?". To our own frustration, we've had to tell them that we do not have the time, money, or manpower.
At the same time, we've observed from the sidelines the lack of coordinated effort to find a cure for tinnitus. Academia moves slowly and is often not patient centered. Traditional funding agencies play it safe by focusing on already established concepts instead of true innovations that may fail. Patient advocacy groups have not successfully conveyed the urgency and severity of the problem.
It's time for a change. It's time for a 'quiet revolution'. It's time for Tinnitus Quest.
Tinnitus Quest is a new foundation, established in Germany as a non-profit just a few weeks ago. It was initiated by a German entrepreneur called Sven Köllmann. Frustrated with the lack of progress, he has already donated significant sums directly to tinnitus research. But Tinnitus Quest will provide a much bigger platform to bring together many patients, donors, and researchers with the simple (but not easy) aim of silencing tinnitus.
Research Approach
Tinnitus Quest's approach to research will be one of 'high risk, high gain'. Instead of building on already established concepts, we will seek to fund exploratory research trying out new concepts, and then iterating on successes and failures. We have identified three areas that are key to silencing tinnitus: 1) Fundamental research to reveal the underlying mechanisms of tinnitus; 2) Finding an objective measure of tinnitus; and 3) Testing out experimental approaches to resolve tinnitus. We've decided to focus on the third area, because this is where we feel can have the most impact.
Governance Structure
Patients will be heavily represented in Tinnitus Quest's governance bodies. Our Board has five members, three of whom (Sven, Markku, and Hazel) are patients, the other two are researchers: Dirk de Ridder and Hamid Djalilian.
We also have a Patient Board, which – together. with the Scientific Board – will provide advice and input to decision-making and ensure our research is truly patient-driven. We are still seeking additional members for the Patient Board, so do let us know if you are interested.
Public Outreach
One of the biggest problems of tinnitus research thus far has been the lack of public communication. As tinnitus sufferers, we usually only hear about a study before it starts and then years later when the results are published.
Tinnitus Quest will ask researchers whom we fund to provide frequent updates and full transparency. We are committed to communicating equally about successes and failures – because failure often provides unique new insights that could lead to a cure.
Timeline
The rest of 2024 will be mainly about fundraising – both from high-net-worth individuals and the public – so that by early 2025 we can organize a research conference and start giving out grants. But in the meantime, we will be publishing a lot of content, from interviews with artists to research Q&As and much more.
Learn More Through Our Research Q&As
Take a look at the Timeline on the homepage of Tinnitus Quest. There, you will find a number of scheduled public Q&A sessions, allowing you to engage directly with our researchers. Just click the 'Register Now' button to sign up.
What Can You Do?
Join our quest for a cure and become part of the solution. For now, all we're asking is that you visit TinnitusQuest.com and sign up for the newsletter by clicking on 'Get Latest Updates' and sign up to our social media through the icons at the top of the homepage. Over time, we hope to convince you to donate your time or money to the cause as well.
We hope you're as excited as we are about this news. Feel free to ask us any questions!