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Geraldine Dietz Fox, Patient Advocate
Profiles of Pioneers Who Led the Way for the NIDCD
You need a good pair of walking shoes.
Geraldine Dietz Fox learned about politics as a youngster through her father, Harry Dietz, a lawyer who was significantly involved in the Florida election campaign of then-Senator Claude Pepper (D-FL), and later through her husband, Richard Fox, a builder, who ran Ronald Reagan’s presidential campaign in Pennsylvania. These experiences taught her that a citizen could seek change through political channels.
Fox lost hearing in her left ear at age 27, when she caught mumps from a boy at the preschool where she taught. She was frustrated to learn that medical treatment could not restore her lost hearing. In addition, her doctors told her she was lucky to still have hearing in one ear, noting that many of their patients infected with mumps lost hearing in both ears.
In 1986, President Reagan appointed Fox to serve on the advisory committee of the National Institute of Neurological and Communicative Disorders and Stroke, which at the time supported hearing research at the National Institutes of Health. (The institute is now known as the National Institute of Neurological Disorders and Stroke.) Fox was disappointed in the amount of hearing research supported by the institute.
She decided that hearing research needed its own home within the NIH.
Fox Goes to Washington
On behalf of the Deafness Research Foundation, Fox took her political know-how to Washington, D.C., to advocate for increased research focused on deafness and hearing loss, and so boost the chances that safe and effective treatments for hearing loss could be developed.
Being a private citizen with significant hearing loss gave her credibility with politicians and staff on Capitol Hill, she says.
“You need a good pair of walking shoes to spend your days walking the marble halls of Congress, talking to everyone you meet, and making friends,” says Fox. Her knack for remembering names and details about the people she’d met helped her establish good relationships and build important networks. Her journey began with a visit to Claude Pepper, who had been serving as a U.S. congressman for more than 20 years after 14 years as a senator.
“From our first meeting in Representative Pepper’s office, Peter Reinecke, the congressman’s director of research, and I bonded, and he became my friend and mentor,” she notes. “I benefited tremendously from his vast understanding of the Hill, and we worked diligently together to surmount many challenges. His involvement was crucial.”
During this time, she also became friends with Dr. Josef Miller, Ph.D., and Robert Ruben, M.D., who introduced her to the medical and scientific communities and provided invaluable knowledge and support in achieving her goal of increasing hearing research.
I benefited tremendously from [Peter Reinecke's] vast understanding of the Hill, and we worked diligently together to surmount many challenges. His involvement was crucial.
Establishing the NIDCD
Fox’s advocacy efforts played a big part in getting Congress to propose establishment of the National Institute on Deafness and Other Communication Disorders (NIDCD). She shared her personal story and came armed with statistics and other information about deafness and hearing loss. By explaining the impact and importance of hearing research, she was even able to persuade some members of Congress who typically voted to reduce federal programs to instead vote to support the proposed new institute. She rallied leaders in health care, research, and education, and brought in children and celebrities with profound hearing loss to testify.
In September 1987, legislation proposing the new institute was introduced in the House by Representative Pepper and in the Senate by Senator Tom Harkin (D-IA). Thirteen months later, the bill made its way to the White House. Reinecke, the lead congressional staffer working in support of establishing the NIDCD, heard that President Reagan was being advised to veto the bill. He immediately contacted Fox to strategize.
Fox called Howard P. House, M.D., a renowned hearing specialist in California. She urged him to encourage Reagan, one of his most famous patients, to sign the bill. She then turned to her husband for help; he called his friend Ken Duberstein, then Reagan’s White House chief of staff. Fox recalls that when Duberstein called back, he reported that of all the bills put on Reagan’s desk, “the bill that would [establish the NIDCD] is the one he’s going to sign!”
The next day, October 28, 1988, Reagan signed Public Law 100-553, authorizing the formation of the NIDCD.
Establishing the National Organization for Hearing Research Foundation
After helping to establish a new home for hearing and communication research at the NIH, Fox chaired the NIDCD’s Advisory Board from 1989 to 1993. She developed a deeper understanding of the field of communication research and coordinated updates to the NIDCD research strategic plan. She believed that the NIH funded mostly “safe” science, however, and she wanted to create a way to support young scientists with innovative ideas.
Working with a group of physicians and scientists, she established the National Organization for Hearing Research Foundation (NOHR) in 1988. NOHR funded innovative projects on the prevention, causes, treatments, and cures for hearing loss and deafness.
In 2015, Fox was ready to retire the organization she founded, but wanted to continue the spirit of its mission. Working with NOHR grantee and otolaryngology researcher Elisabeth Glowatzki, Ph.D., she established an endowment for hearing research at Johns Hopkins University. The endowment supports an honorary prize and a modest monetary award to scientists beginning to work independently in their research careers. The recipients may be working at any institution around the world. Each year, the Association for Research in Otolaryngology announces the recipient of the Geraldine Dietz Fox Young Investigators Award at its midwinter meeting.
Hope for the Future
Fox is pleased with the progress she’s seen in hearing research over the last 30 years, including improvements to hearing aids and cochlear implants. She stresses how important it is for people to overcome their reluctance to using hearing aids, and she hopes that use will increase with the coming availability of over-the-counter hearing aids.
She is confident that scientists will one day be able to regenerate the cells in the ear that detect sound, thereby treating—and perhaps even curing—some forms of hearing loss. She understands, however, that the pace of scientific progress can be slow. She says, “I want everyone to understand how long research advances take, and how important it is to maintain continued support for hearing research.”
I want everyone to understand how long research advances take, and how important it is to maintain continued support for hearing research.
Read more about the history of the NIDCD: