CHAPTER FOURTEEN
The American Tinnitus Association and
The Roadmap to a Cure
James A. Kaltenbach, PhD and David P. Fagerlie, MSW

The first organization in the world formed to address tinnitus was the American Tinnitus Association founded in 1971 by Charles Unice, MD. Dr. Unice, a tinnitus sufferer, sought to create an organization that would raise money to fund research for a cure. He soon called Jack Vernon, PhD, the one tinnitus researcher in the world at the time. Dr. Vernon explained he could not offer Unice treatment for tinnitus as none existed. Even so, three days later Unice showed up at Vernon’s office in Portland. During a walk that afternoon while standing near a water fountain in downtown Portland, Unice discovered he could not hear his tinnitus. It was a “Eureka!” moment for Vernon who understood immediately what had happened. The sound of the flowing water masked Unice’s tinnitus, providing him with welcome relief. “Obviously, we can’t park Unice next to the fountain for the rest of his life,” Vernon thought. “But we might be able to replicate the fountain’s sound in some sort of wearable device.” That’s how Vernon developed wearable masking devices (see Chapter 10). Jack Vernon became a co-founder of the American Tinnitus Association and the driving force behind funding tinnitus research at a time when no other support existed.

Gloria Reich, PhD joined the American Tinnitus Association in 1975 and later became its first Executive Director. She and Vernon developed a tinnitus training course for healthcare professionals and brought it to communities throughout the country. Although resources were limited, in 1980, American Tinnitus Association awarded its first research grant in the amount of $12,000.

Though formed to be a fundraising machine to support research, in looking back, one could conclude that the major contribution American Tinnitus Association made in its first decade was as source of comfort for those who were suffering. So little was known. No established protocols for treatment or therapeutic devices existed. Tinnitus sufferers and their loved ones feared that this condition was a sign the affected person was going crazy. American Tinnitus Association became an association of individuals - the afflicted, their families, and informed healthcare professionals - sharing information, support and encouragement.

In 1978, the syndicated newspaper publication Parade ran an article on tinnitus and the American Tinnitus Association efforts to provide treatment for it. Over 100,000 pieces of mail, many with donations, arrived at the American Tinnitus Association door over the next few weeks. It took three full months for the nascent staff to respond to the overflow of mail. In 1983, the syndicated newspaper column "Dear Abby" mentioned tinnitus and referenced American Tinnitus Association. The office received another 20,000 letters. Mentions in "Dear Abby" and "Ann Landers" columns in 1986 produced another 130,000 letters. Contributions from so much public attention were the seed capital that moved the association forward. American Tinnitus Association’s reputation as the center of tinnitus information expanded throughout the USA and into other countries.

Today, American Tinnitus Association remains the largest association of individual contributors making grants for tinnitus research. Similar associations are now present in other countries, mostly to provide support for those with tinnitus (see Table 10-I at end of this chapter).

Today, tinnitus may very well be the "malady" of the 21st century. Early on, opportunities for growth were not as straightforward as they are today. These days tinnitus is being openly discussed and media organizations regularly report about it. American Tinnitus Association has increased its momentum toward educating community and government leaders and inspiring greater philanthropy. American Tinnitus Association has assumed a leadership role to rid the world of a scourge that is silent and unseen to those unaffected but shreds quality of life for a rapidly increasing number of adults, youth, and children. We need American Tinnitus Association and organizations like it more than ever before.

American Tinnitus Association was established specifically to raise money for tinnitus research. Before 1925 only nineteen scientific papers about tinnitus had been published. Progress was slow. In the ten-year period between 1955 and 1964, fifty-two reports were published. From 1965 to 1974 the number increased dramatically to 472 published works on tinnitus. When the American Tinnitus Association made its first grant in 1980, it was the first by any organization given specifically for the study of tinnitus.

In the late 1990s, it became clear that a general plan might be needed to help find the cure. The American Tinnitus Association again took a leadership role by recognizing that many scientists and clinicians were needed from different disciplines, and so a roadmap to a cure would be helpful.