Support Tinnitus Hub – Let’s Reclaim Silence
Almost a year ago, I developed severe tinnitus. I found myself almost paralyzed from hearing the loudest constant ringing in my head. Tinnitus also known as “ringing in the ears” afflicts almost 15% of the global population. In the USA alone, some 50 million people suffer from the condition. The condition rendered me helpless. I was losing my mind and could not sleep. The stress of having to endure this horrible sound was unbearable.
I spent enormous resources meeting with the best doctors in New York City and abroad. I tried all manner of treatments, from hearing aids to shock therapy. I would get my hopes up time and time again, only to be crushed. Unless one has a fixable underlying cause, for most tinnitus sufferers, there simply is no cure. While some with (mild) tinnitus learn to cope, there is very little relief for those of us with severe tinnitus. I only found empty (and expensive) promises of relief. The feeling of helplessness was overburdening.
Source Tinnitus Hub Survey (2020): n=8,238
All I could think about was putting my affairs in order. I did not believe I could endure this non-stop misery. I was having suicidal thoughts. These feelings I now felt are not uncommon with tinnitus.
What was I going to do for the rest of my life? If there was no cure, perhaps I might find a support group. After searching 100s of tinnitus organizations. I quickly found each one of these organizations offered no shortage of miracle cures, gadgets or herbal remedies that would magically cure my tinnitus. After looking deeper into each of these organizations, I quickly found all had a private agenda of either capitalizing on this horrible condition for profit or simply recruiting patients like me for their practices. I again fell into a depressed state with little hope.
I finally came across the entirely volunteer-based organization Tinnitus Hub, www.tinnitushub.com, which graciously and tactfully shared current information regarding tinnitus. I did not have to pay an enrollment fee, there were no ads, and they did not try to sell me anything.
Through the online Tinnitus Talk community, run by Tinnitus Hub, I found relief in knowing I was not alone. I renewed my faith in humanity through others sharing their personal journeys with tinnitus. Most of all, I felt that I could be part of the solution; by contributing my personal story, I could in turn help others avoid the suffering I endured.
Tinnitus Hub’s prime mission is the quest for a cure. I learned that tinnitus research is severely underfunded. To illustrate the lack of investment in tinnitus: there are currently only 6 active clinical trials for tinnitus versus 324 for depression (ClinicalTrials.gov).
Markku Vesala founded the organization in 2011 after he developed tinnitus due to earwax removal. Like many of us, he searched online for help but found there were no good support groups or educational resources. Hence, he launched the site tinnitustalk.com and slowly built a community of people helping each other, discussing research and treatments, and joining together in awareness-raising campaigns. Hazel Goedhart joined as director of Tinnitus Hub in 2019 after she suddenly developed tinnitus for unknown reasons.
Tinnitus Hub has achieved the following, being an entirely volunteer-driven organization:
Development Now Initiatives. www.dniusa.org is a New York City registered 501c3 charity whose mission is to simply protect the basic human rights or all persons. DNI is raising funds to directly support the exceptional work of Tinnitus Hub and help expand its services to reach a much greater audience.
Both Hazel and Markku support Tinnitus Hub with their personal finances and modest donations from mostly tinnitus sufferers. Some of the basic expenses they need to cover include:
Maintaining the Tinnitus Talk support community: server fees, domain names, software subscriptions, plug-ins and add-ons, periodic upgrades
Production of podcasts, videos, and webinars: equipment, studio rent, editing software, online recording services, transcription and subtitling
Public outreach and awareness-raising: newsletter service, marketing & design, Facebook/Google ads, publishing & distribution platforms
Research activities: survey tools, analytical tools, database maintenance
Organizational costs: bank account fees, accountant, document storage, MS Office, project management software, email accounts
The vision is to grow the organization to reach more demographics and geographical regions and to create awareness of the dire need for a cure. Tinnitus Hub will also directly contribute to cure-focused research by expanding its data collection efforts.
If everyone seeing this would simply donate $10 to this very noble cause, we will meet our financial goal of $150,000.
What will my generous donation be used for?
Maintaining the Tinnitus Talk support community, production of educational resources, public outreach and awareness raising, research activities, and organizational costs.
What will my generous donation NOT be used for?
- Office rent
Is my donation tax deductible?
DNI being a fully compliant NYC registered 501c3 Non-Profit Charity your gift is 100% tax deductible. Should you require any necessary documents for tax purposes DNI will be happy to provide them.
What happens to my donation if you do not reach your financial goal?
Unlike other crowdfunding platforms, GOFUNDME does not have minimum requirements of financial goals and all donations will be given directly to support Tinnitus hub.
We cannot wait another day; we must act now to protect future generations from this debilitating condition.
Help us bring back the silence to those that need it the most.
Now is the time to give!