As we're approaching Christmas and New Year, we'd like to take a moment to reflect on the past year, look to the future, and express our gratitude.
While it's sad that many new people come here every day seeking help, we can and do find strength in numbers. This forum was always meant to be a warm and welcoming place for all who struggle with tinnitus and hyperacusis. Your friends, family or co-workers may not understand what it's like, but we do.
Obviously, Tinnitus Talk isn't all unicorns and rainbows. We see heated arguments flare up and emotions can get high. We'd like to urge you all to remember that we're in this together. More than ever, we need to stand together to lobby for better tinnitus care and more effective treatments. Only as a cohesive community can this be achieved.
Community Accomplishments
2019 was a key year for Tinnitus Talk. We took more steps than ever outside the bounds of this forum. Just a few examples of what we, together, have achieved:
— We launched the Tinnitus Talk Podcast, keeping people with tinnitus around the world informed and involved; some episodes have drawn up to 50,000 listeners!
— In major part due to our efforts, Dr. Susan Shore won the STAT Madness competition, gaining much needed media attention to curative tinnitus research.
— We published a moving interview with the mother of Gaby Olthuis, whose struggle with tinnitus and hyperacusis led to her death by euthanasia.
— We invested in growing our network in the research community, through our partnership in ESIT and TIN-ACT.
— We attended the biggest annual tinnitus research conference (TRI), where we interviewed numerous tinnitus researchers on video.
— We co-authored a research paper on heterogeneity and one on somatic tinnitus, based on our survey data.
— We formally provided feedback to the newly drafted guidelines for tinnitus management in the UK.
— We launched our very own free science-based sound app called TinnitusPlay.
As you may know, we have no paid staff members. We all do this in our spare time, and we couldn't have achieved half as much without an amazing team of volunteers. Many have contributed their efforts, but we want to specifically acknowledge @Liz Windsor, @Jack Straw, @TuxedoCat, @Candy, @Autumnly, and @PeterPan.
We send love to all of our benefactors. If you have donated even $1 to help cover our expenses, we are deeply grateful to you. Our benefactors mean a lot to us. You not only guarantee we can continue with our work and not have to keep paying for things out of our own pockets, but you also motivate us by showing that what we are doing is worth your financial support.
You Can Help Out Too
Of course, we have big plans for 2020 as well.
— We plan to intensify our efforts around (big) data gathering to drive curative tinnitus research forward;
— We plan to implement concrete measures to promote patient involvement in research and steer research in a more patient-focused direction;
— We will keep exploring options for political lobbying – see our first brainstorm on the topic here;
— We will want to add new features to Tinnitus Talk to support our future plans and to improve user experience.
If you like the services that we provide and would like to contribute to our mission of improving the lives of people with tinnitus, there is of course the option of donating to Tinnitus Talk. But we are also in dire need of volunteers to help out with a multitude of tasks in many different areas of expertise. Contact @Markku and @Hazel via PM if you are interested.
Thank you all for being part of the Tinnitus Talk community.
Member
Tinnitus Hub has singlehandedly raised the game and a lot of the credit for this has to go to them.
A big thank you to everyone that's advocating and volunteering for our cause. Hoping that the 2020s will finally bring the scientific breakthroughs and medical treatments many are waiting for.
