Hearing Health Spring 2021

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Hearing Health Spring 2021

A Publication of Hearing Health Foundation

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The Tinnitus & Hyperacusis Issue


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The mission of Hearing Health Foundation (HHF) is to prevent and cure hearing loss and tinnitus through groundbreaking research and to promote hearing health. HHF is the largest nonprofit funder of hearing and balance research in the U.S. and a leader in driving new innovations and treatments for people with hearing loss, tinnitus, and other hearing and balance conditions. As part of our outreach, we provide this quarterly magazine for free to our vibrant community of readers and supporters, as well as to the dedicated professionals who work with them. Please subscribe at hhf. org/subscribe and make a donation at hhf.org/donate.

Spring 2021: The Tinnitus & Hyperacusis Issue Because these two hearing conditions—each potentially life-altering—often overlap, their causes and treatments may also share similarities.

Timothy Higdon, President and CEO, HHF

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Hearing Health The Tinnitus & Hyperacusis Issue Spring 2021, Volume 37, Number 2

Publisher Timothy Higdon, President and CEO, HHF Editor Yishane

Art Director Robin

Features

Senior Editors

10 Living With Tinnitus Full Mental Adjustment. Steve DiCesare. Tinnitus and Hyperacusis Overview. 16 Managing Tinnitus What Works for Me. Col. John T. Dillard (U.S. Army, Ret.) 20 Advocacy Advocating for Relief. Jemma-Tiffany Rosewater 22 Living With Tinnitus Harnessing a Hub. Hazel Goedhart

30 Education How Far We Have Come. Jayne Sowers, Ed.D. 34 Planned Giving Realizing Your Charitable Vision. Elizabeth M. Sommer 36 Design In Search of Quiet. David M. Sykes 38 Research Spotlight On: Lisa Goodrich, Ph.D. 42 Research Recent Research by Hearing Health Foundation Scientists, Explained.

28 Books Please Send a Decoder. Sylvia Byrne Pollack

Departments

Sponsored

06 @editor 08 HHF News 24 Meet the Fundraiser Ankitha Lavi 26 HHF 2021 Reader Survey 50 Meet the Researcher Calvin Wu, Ph.D. Les Paul Foundation

48 Advertisement Tech Solutions. 49 Marketplace Hearing Health Foundation and Hearing Health magazine do not endorse any product or service shown as paid advertisements. While we make every effort to publish accurate information, we are not responsible for the accuracy of information therein. See hhf.org/ad-policy.

Cover After getting a cochlear implant, Steve DiCesare found he could cope better with his tinnitus and hyperacusis. Illustration by Ian Miller.

Visit hhf.org/subscribe to receive a FREE subscription to this magazine.

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Kidder

Amy Gross, Lauren McGrath

Medical Director David Staff Writers Shari

S. Haynes, M.D.

Eberts, Kathi Mestayer

Advertising hello@glmcommunications. com, 212.929.1300 Editorial Committee

Peter G. Barr-Gillespie, Ph.D. Judy R. Dubno, Ph.D. Christopher Geissler, Ph.D. Lisa Goodrich, Ph.D. Anil K. Lalwani, M.D. Rebecca M. Lewis, Au.D., Ph.D., CCC-A Jay R. Lucker, Ed.D., CCC-A/SLP, FAAA Joscelyn R.K. Martin, Au.D. Board of Directors

Chair: Col. John T. Dillard (U.S. Army, Ret.) Sophia Boccard Robert Boucai Judy R. Dubno, Ph.D. Ruth Anne Eatock, Ph.D. Jason Frank, J.D. Jay Grushkin, J.D. Roger M. Harris David S. Haynes, M.D. Elizabeth Keithley, Ph.D. Cary Kopczynski Anil K. Lalwani, M.D. Michael C. Nolan Paul E. Orlin Robert V. Shannon, Ph.D. Hearing Health Foundation 575 Eighth Avenue #1201, New York, NY 10018 Phone: 212.257.6140 TTY: 888.435.6104 Email: info@hhf.org Web: hhf.org Hearing Health Foundation is a tax-exempt, charitable organization and is eligible to receive tax-deductible contributions under the IRS Code 501(c)(3). Federal Tax ID: 13-1882107 Hearing Health magazine (ISSN 2691-9044, print; ISSN 2691-9052, online) is published four times annually by Hearing Health Foundation. Copyright 2021, Hearing Health Foundation. All rights reserved. Articles may not be reproduced without written permission from Hearing Health Foundation. USPS/Automatable Poly To learn more or to subscribe or unsubscribe, call 212.257.6140 (TTY: 888.435.6104) or email info@hhf.org.


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letters to the editor

dear editor: I am writing to ask that Hearing Health magazine change its editorial policy regarding the term “age-related hearing loss,” a phrase used in your survey and on page 31 in the Winter 2021 issue. It should not be used, nor should the similar term “presbycusis.” Here’s why: Hearing loss is common with age, but it is not part of normal physiological aging. Hearing loss with age is predominantly noise-induced hearing loss (NIHL). I came to this conclusion after reviewing the literature, including classic 1960s studies of hearing loss in isolated populations not exposed to noise. Based on experimental observations, Charles Liberman, Ph.D., and team concluded the same in a paper published in the Journal of Neuroscience in August 2020. Yet it turns out neither of us had discovered anything new. Karl Kryter, Ph.D., used the term “sociocusis” in 1983, meaning “non–work–noise– induced hearing loss,” but it was Aram Glorig, M.D., who coined the word back in 1962. If people think hearing loss is part of normal aging, they are less likely to take steps to protect their hearing. They may think, “When I reach middle age, I’ll probably need reading glasses like my parents, and when I get older I’ll probably need hearing aids like my grandfather.” They don’t understand that lenses provide a visual correction, but as your staff writer Shari Eberts has explained, hearing aids merely amplify sounds and don’t help improve speech comprehension anywhere near what glasses or contact lenses do to improve vision. NIHL may be the most accurate term, but sociocusis also includes other causes of hearing loss such as ototoxic drugs or ear infections, while emphasizing the importance of noise exposure. Perhaps Hearing Health magazine can substitute sociocusis for age-related hearing loss and presbycusis.

dear editor: Reviewing the Winter 2021 issue of Hearing Health and filling out the survey has inspired me to write to suggest additional topics for you to explore that would be helpful to people like me, people with hearing challenges who are also advocating for community changes to make it easier for hearing challenged people. While the primary aim of the Hearing Health Foundation is to research to prevent and cure hearing loss, the mission statement also includes the phrase “to promote hearing health.” To this end, it would be helpful to focus on the acoustic environment of public buildings and spaces. I would be particularly interested in the latest findings related to hearing loop technologies and other audio technologies that can support the integration of hearing challenged people into the civic, political, and entertainment culture of our communities. At this time, I am involved in the creation of a new cohousing community in California. We are considering what acoustic treatments will be most effective for our members, many of whom, like myself, are up in years. I am relatively new to the hearing advocacy world. If there are resources that you would recommend on this topic, I would be pleased to receive them. Thank you for your consideration of these suggestions and for all the work you do.

Daniel Fink, M.D. The Quiet Coalition California

Anne Geraghty Washington-Commons.org California

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from the editor: Thank you for raising this terminology issue. We rely on definitions established by scientific bodies like the National Institutes of Health and will watch for nomenclature updates. Thank you for also providing references for the work you cite, which we share at hhf.org/spring2021-references.


letters to the editor

from the editor: Making our environments acoustically friendly, including decreasing ambient noise, has long been a goal of both David Sykes, who has a story on the topic on page 36, and Daniel Fink, M.D., who wrote a letter on the opposite page and is also a frequent contributor. Both are with the group Quiet Communities (which includes the Quiet Coalition), at quietcommunities.org. The Hearing Loss Association of America has information about hearing loops at hearingloss.org/hearing-help/technology/hat/ hearing-loop-technology. For noise and privacy guidelines in communities, one reference is fgiguidelines.org/guidelines/2018-fgi-guidelines.

dear editor: I found the Winter 2021 article on virtual rehabilitation for vestibular problems encouraging (“Going Virtual,” by Anat Lubetzky, Ph.D.). I had standard physical therapy for my unilateral vestibular hypofunction, which was very helpful, but did think some sort of virtual application could be useful. This would be especially true for those that already have physical problems that make some aspects of standard therapy challenging. In my case because of back and knee issues, standing on one leg repeatedly became a bit painful. I would also think using virtual real world situations such as the subway scenario would be doubly helpful for people like me. Certain situations seem to trigger episodes. When I initially got out of the hospital I could not drive or ride a bike. When I was able to drive I found that if anyone was in the car and talking to me, I would get dizzy. Glad to see good research like this is taking place. Your publication is a critical link for bringing research and people’s experiences together. Arthur Lichtman California

dear editor: I always enjoy reading your magazine. I am a jazz educator in my 80s and I’ve been publishing books, CDs, etc., for 53 years. I play sax, bass, and piano. Hearing is very important to me as well as to all the people I work with. Reading Hearing Health reminded me of a joke I use to let people know I have hearing aids and how important they are. I’ll be lecturing to musicians who have come to hear me explain how to play jazz and improvise on their chosen instrument. Everyone is usually nervous because they aren’t sure what is going to be asked of them. Right in the middle of music theory when my students are just about to get lost, I’ll say: “I bought these hearing aids about six years ago and came home to find out I’d been married!” That always relaxes things. Jamey Aebersold Founder, jazzbooks.com Indiana

dear editor: I live in a retirement community and have organized a support group for residents with hearing loss. Of course, a large percentage of us have a problem with hearing! We are very grateful for your work and eagerly read your magazine. Virginia Stella California

We always appreciate hearing from our community. Please email us at editor@hhf.org.

Support our research: hhf.org/donate.

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NEWS

HHF

Refreshed Visual Identity Introduced To uphold and continue to communicate our commitments to excellence and innovation, Hearing Health Foundation (HHF) presents refreshed branding to reflect our ambition to fund cutting-edge research and to make hearing health treatments and prevention top of mind for everyone, no matter their age, gender, location, or circumstances. The logos were created pro bono by award-winning agency The Escape Pod, based in Chicago, and were launched in February 2021 and appear with this issue of the magazine. Crisp and modern, the refreshed designs are consistent with our mission of progress through research. The main logo’s symbol can be interpreted multiple ways, echoing how each individual’s hearing health experience is unique. Similarly, research findings are dynamic, ever evolving, and inform multiple scientific questions. The refreshed designs for HHF’s hallmark research programs, the Hearing Restoration Project and Emerging Research Grants, unify these two programs while also demonstrating their distinct identities. (To see the program logos together, please turn to pages 42–43.) Having given life to so many prominent advances in hearing and balance research since 1958, HHF remains committed to the preservation of our history in our communications, and continues to emphasize “Prevention | Research | Cure” in our tagline. Our refreshed branding embraces a proactive approach to hearing health while underscoring the continuing need for forward motion in scientific research.

Second Annual Thankathon HHF is incredibly thankful for our community of supporters. Our life-changing hearing and balance research simply would not exist without the generosity of our donors. To communicate our gratitude in a special way, we held our annual Thankathon in October 2020, and for the second year HHF volunteers, Board of Directors, and staff again made contact with about 800 individuals who contributed to our work over the past year. Thanks again to everyone who helped further our mission during an especially challenging time. We are always so happy to chat with donors who also receive the magazine, which has so far resulted in at least one story shared by a friend of HHF. Please see the article by Jayne Sowers, Ed.D., about her fellow pioneers of early intervention for infants and toddlers with hearing loss, on page 30.

New Scientific Director of the Hearing Restoration Project Lisa Goodrich, Ph.D., a professor of neurobiology at Harvard Medical School, became scientific director of the Hearing Restoration Project (HRP) in January 2021 and facilitated the annual HRP meeting in mid-March. She had since 2016 served as a member of HHF’s Scientific Advisory Board, which is the body of hearing and balance experts that provides guidance and support to the HRP. Goodrich succeeds Peter Barr-Gillespie, Ph.D., the HRP scientific director since 2011, and he will in turn join the Scientific Advisory Board. Please learn more about Goodrich and the HRP on page 38. 8

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news

A Heartfelt Tribute to Kerry Gifford HHF would like to honor the life and family of Kerry Gifford, who passed away in July 2020 at the age of 72. Gifford generously named HHF as the recipient of his estate, and we sincerely thank his niece Patti Duer for providing details about her uncle’s life. Gifford was the youngest of five children and all had a hearing loss since childhood except one, who was color blind. Gifford was born in the city of Ogden, in northern Utah, on January 21, 1947, and spent most of his life in the area. He graduated from Ogden High School and attended Weber State College, also in Ogden. He worked at Hill Air Force Base outside the city for 26 years before becoming self-employed as a day trader, a job he loved, and living in Farmington, just south of Ogden. Gifford’s wife of four decades, Clara, a retired schoolteacher, passed away two years before him. He had taken care of her while she endured a long, painful battle with stomach cancer. He had always enjoyed traveling with her and missed her intensely. Gifford’s other passion was cars, and for years he drove a red Buick Reatta. He also enjoyed cooking, learning about beer and wine, skiing in the mountains close by, and bowling. He earned many trophies with his local bowling league. Gifford was preceded in death by his father, mother, and siblings. Surviving are many nieces and nephews. Because of the COVID-19 pandemic, a graveside service in Ogden was held to honor Gifford, attended by a group of 35 people, and his casket was placed atop that of his beloved wife. HHF is tremendously grateful that Gifford’s estate allows us to further our mission of prevention and research of hearing loss and related conditions.

In this photo from the 1970s, Kerry Gifford is on the far left with three of his siblings including Barbara, the mother of Patti Duer, who shared details about her uncle’s life.

Paul Orlin Receives HHF Leadership Award HHF’s Board of Directors presented Paul Orlin with the Collette Ramsey Baker Leadership Award in January 2021. This award recognizes one individual annually for emulating our founder’s service and dedication to funding research. A principal at Amici Capital LLC in New York City, Orlin has enthusiastically served as a member of the board since 2000 and has been the board vice chair since 2015. He was integral to the creation of our groundbreaking Hearing Restoration Project, and under his tenure we have also significantly strengthened and expanded our Emerging Research Grants program. HHF sincerely appreciates Orlin for his inspiring, ongoing leadership.

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Full Mental Adjustment

living with tinnitus

Making friends with my tinnitus. By Steve DiCesare, with illustrations by Ian Miller I’ve had tinnitus my entire life. I’m in my early 50s now. I started noticing my hearing loss around age 10, and by age 20, I was diagnosed with a severe to profound hearing loss. I had been a recording and touring musician. Somehow I was able to write, record, and perform despite the hearing loss and constant tinnitus. I never used hearing aids as I had enough hearing in my good, left ear to make do. The tinnitus was a high-pitched hissing sound in both ears at a volume of about 3 out of 10—meaning that in any given sound situation, 30 percent of what I was hearing was high-pitched hissing. As my hearing gradually declined, the tinnitus remained and seemed louder because I wasn’t hearing other sounds. Tinnitus became a part of me—my friend, always there when I looked for it, a reminder that life is indeed a challenge. Sometimes I would wonder if the tinnitus was still there, and then once I wondered, it would torment me—a reminder that yes, it definitely was! Tinnitus became a consistent, persistent, and dependable presence. Along with a hearing loss, I have a noise sensitivity problem, hyperacusis. Most loud noises throw me for a little brain zap. It feels physical, like someone is poking me in the inner ear. Sharp noises such as dishes clanging, electric tools, kids banging on stuff, babies screaming, motorcycles—they all feel like an electric shocker to the head. My friends and family and I had long relied on a combination of signing, speaking, yelling, writing, and acting things out. Call it “total communication.” Still, as my hearing declined—to the point where my wife Tracey and I couldn’t converse while sitting next to each other on the couch in a quiet house—I decided to begin the steps necessary to finally get a cochlear implant in my worse, right ear. I was 43. Severe hearing loss plus tinnitus is not a good combination. The less hearing you have means the less distraction from the tinnitus. All that you hear are the cracks, hissing, creaks, waves, and trains—all day and night long.

The Flood

Part of why the tinnitus became so unbearable was that it started presenting differently. The flood of new sounds introduced itself to me one night by way of a group of angels. I awoke to a choir of what sounded like harmonizing angel voices—spacy, sustained, synthesized. Sometimes I heard individual voices, muddied sounds like the parents in Charlie Brown cartoons. I started calling them the Radio Broadcast.

I discovered this is a diagnosed condition called nonpsychotic auditory hallucinations. Nonpsychotic! The second part of the tinnitus flood is what I call Wind Through the Cave in a Storm. It’s like a howling sound or a washout wave rolling in and out of my head. This one is a little scary because it can get pretty fierce, like a tsunami taking out a city block or stormy waves crashing against the lighthouse—and like I should sit down right this second or hold onto the wall. The third I call Trains Come-a-Roaring. This is either a clicking or rhythmic tone that sounds like an engine, fast and repetitive rotations that my musical mind labels a 16th note. The sound of a train running over a rickety section of tracks kind of nails it. I believe this to be some sort of “hearing” of bodily functions, such as the blood running through the veins in my ear. The last of the tinnitus flood is what I call Coach’s Whistle. This is a positional noise that happens when I tilt my head to the right. It’s the most distinct as well as the clearest and loudest of the whole flood. But unlike the others, it has an on/off switch. The whistle blows steady and clear, but stops when I stop tilting my head. My lifelong tinnitus jacked up to about a 5 out of 10. Some days these sounds were on the right side of my head, one or two of them on the left side, sometimes both sides, all of them changing levels and coming and going.

A Lot of Doctors

I saw 25 different doctors and practitioners of alternative medicine over the course of a year in efforts to understand and hopefully reverse this new tinnitus flood. I hadn’t seen a doctor in about 15 years before that, other than my primary care physician. Now, I know there are people out there who are really suffering. I realize how lucky I am. But I forget that so quickly on days when the tinnitus flood is raging. That year, I was alternating between hiding in my basement and coming upstairs and yelling at everyone, angry and irritated and just trudging through the day. Each professional I saw has a different opinion and solution. “Antidepressants,” the M.D. says. “Herbal drops,” the naturopath says. “Misaligned hips, possibly causing tension in your spine and neck area,” the chiropractor says. “Twisted neck muscles,” the physical therapist says. “A kidney yin deficiency, probably with some nerve miscommunication, and we could also work on inflammation and overall health,” the acupuncturist says. “No, not everybody’s neck and shoulders feel sore all the time, or are this tight,” the massage therapist says. a publication of hearing health foundation

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Pink Noise

I remembered something the audiologist said to me once. She said if we give the brain something to focus on, something else to hear, the tinnitus could start to fade into the background. And I knew my tinnitus became louder as my hearing worsened. One night I was doing some work on my laptop in the living room while my wife was in the kitchen doing the dishes. My hyperacusis makes the clanging and clacking of cleaning up feel excruciatingly loud.

None of my efforts or actions to diminish my tinnitus seemed to make any sense or improve my symptoms. Nothing helped until I finally fully accepted the situation. Acceptance allowed me to let go and surrender. Total acceptance allowed me to open my mind to new ideas and thoughts about the tinnitus. “A misaligned jaw with temporomandibular joint dysfunction,” the neuromuscular dental professional says. “A pollen allergy, but I don’t think these allergies are causing your tinnitus symptoms,” the allergist says. “You should tell Tracey that more bedroom time is the only thing that helps your symptoms,” my buddy Mark says. Jokes aside, I spent a year in despair, researching and trying all the various healing techniques recommended by these specialists. I kept logs of the different things I ate or drank, any changes in physical activity, and how weather fluctuations affected my tinnitus. All in attempts to try to “heal” the tinnitus. Telling myself, Hey, that was a rough run, but you had to find out. You needed to do the work and see for yourself. None of my efforts or actions to diminish my tinnitus seemed to make any sense or improve my symptoms. Nothing helped until I finally fully accepted the situation. Acceptance allowed me to let go and surrender. Total acceptance allowed me to open my mind to new ideas and thoughts about the tinnitus: This is it. This is how it’s going to be. Deal with it. You are tougher than you think. You can figure something out. 12

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Pot banging sounds would trigger fight or flight responses and elevate my blood pressure and anxiety, which in turn would elevate the tinnitus noise, which in turn would elevate my anxiety and blood pressure, and on and on. In the living room, flinching at loud noises from the kitchen, I searched YouTube for sound maskers. I learned about the many masking noise colors, each with a different frequency mix. I discovered that “pink noise” has been found to give relief as a masker for people with hyperacusis. Listening and watching the accompanying video of swirling pink cotton candy, I found that I suddenly stopped noticing the noise from the dishes clanging in the sink. I could focus on the pink noise and the kitchen noises faded to the background. I started experimenting with pink noise in every situation that made me uncomfortable. Just jogging on gravel would give me anxiety, so I had started jogging on grass or running circles around a field. I downloaded the pink noise loop onto my iPhone and wore it on my shoulder before running on the gravel trail. It worked!


living with tinnitus

days and a bunch of bad days. Good days were approaching the point where I wasn’t thinking about the new sounds and being stimulated and distracted by them every second of the whole day. On bad days the sound stimuli I received through the implant would change from a comfortable level to a more severe intensity, triggering my hyperacusis. Eventually the good days outnumbered the bad, as my brain adjusted to hearing and processing sounds. Hearing through my implant gives my brain something consistent to focus on rather than the shrieking, buzzing, and ringing tinnitus, or the hyperacusis, the perceived shocks of random sounds that pop up through the day. And the pink noise loop on my phone has become my go-to strategy for coping with both conditions. It’s like a nice big fluffy pink cloud blanket, mellowing out the sounds.

Glass Half Full

In Search of Stimuli I could see that I needed to better hear actual sounds to help distract my brain from the tinnitus noises. I had surgery for the cochlear implant. After activation, it took my never-amplified brain some time to adjust. At first, it was hard to go to work and do other crazy things, like talk to people. I was told to try to block out the noise and focus on what the real sounds are, and the brain would put it together. There are programs to work through, training the brain to the new sounds, which I worked on very diligently. Patterns started to form. There were a bunch of good

That’s not all. I have also been changing the way I look at the tinnitus. It’s a full mental adjustment. I began to isolate the tinnitus flood sounds and started to work on mentally blocking them out. I create “rooms” in my head and put each noise in a room and close the door. Of course, at night, when I’m sleeping, the noises sneak out to cause havoc in my dreams. They run rampant and have a keg party. I find that early every morning, I need to massage my head and neck and work on breathing and blood flow. I realize this is a form of meditation, and I think this is something you need to come to on your own. When Tracey asks what tinnitus noises I have today, I sometimes find myself wondering which. I can go to that room, knock on the door, and visit with the noise. It would actually seem to get louder! Then I’d leave the room, close a publication of hearing health foundation

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the door again, block it out to some degree, and focus on what I can hear or see or feel as a distraction. It’s working. I could see that I needed to turn the negative connotations associated with my symptoms into something more positive. It has fundamentally changed how I deal with and react to them. Radio Broadcast is now called Communication From My Ancestors. Trains Come-a-Roaring is now referred to as Funky Bass Line. Wind Through the Cave in a Storm is now labeled Healing Spring Rain. And the Coach’s Whistle is now a reminder of how lucky I am and how great life is. I call that one the Game Show Winning Buzzer. I go into the Game Show room, move my neck to the right and—buzz! I’m reminded that I’m winning! Buzz! I’m lucky! Buzz! I will get through this! Buzz! I can do this! I know that I can, and hope you can, too.

This is adapted from “Dear Steve, You’re Going Deaf,” by Steve DiCesare. A Colorado resident, he teaches special education, ASL, and metalsmithing/jewelry. For more, see youregoingdeaf.com. Ian Miller is a cartoonist, illustrator, and musician in Florida. For more, see ianjmiller.com.

Share your story: Tell us your hearing loss journey at editor@hhf.org. Support our research: hhf.org/donate.

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overview

50 million

Tinnitus and Hyperacusis Tinnitus comes from the Latin verb “tinnire,” to ring. Hyperacusis literally means excess hearing, from the Greek “hyper,” over, and “akousis,” hearing. Tinnitus is defined as the experience of hearing sound without an external, acoustic source. While it is commonly referred to as “ringing in the ears,” tinnitus can also be described as buzzing, hissing, whistling, swooshing, and clicking. Tinnitus can be an acute (temporary) condition or a chronic (ongoing) health concern. Brief, spontaneous tinnitus, lasting seconds to minutes, is a nearly universal sensation. Acute tinnitus, lasting minutes to hours, occurs routinely after excessive noise exposure that is intense or prolonged enough to cause temporary injury to the ear. Chronic tinnitus is described as lasting for over three months. The U.S. Centers for Disease Control and Prevention estimates that nearly 15 percent of Americans—more than 50 million people—experience some form of tinnitus. Of this number, roughly 20 million have chronic tinnitus, and two million have debilitating cases. “In almost all cases, tinnitus is caused by the brain’s reaction to a loss of hearing. This reduces the auditory or sound input to the brain. The brain doesn’t like that and will create a new sensation to take the place of what it had been expecting,” wrote the late Robert Dobie, M.D., in the seminal 2004 book, “Tinnitus: Theory and Management,” edited by James B. Snow Jr., M.D. Tinnitus is a symptom, not a disease itself, so identifying and correcting any underlying condition associated with it may help reduce it. Hyperacusis is distinct from tinnitus but the conditions often overlap. Hyperacusis causes one to experience decreased sound tolerance or increased sensitivity to noise. It’s typically a

Americans who experience tinnitus.

30 to 40 percent

condition that someone is not born with but develops, either gradually or suddenly. About 85 percent of hyperacusis patients also have tinnitus, and 30 to 40 percent of tinnitus patients also show symptoms of hyperacusis. It has been speculated that tinnitus and hyperacusis have a shared cause or causes or may exist due to the same mechanisms. Hyperacusis affects an estimated one in 50,000 people and can occur in one or both ears. Reactions to noise may result in discomfort, tension, anger, anxiety, pain, and insomnia. Everyday noises at everyday volume levels can feel intolerable, such as the sounds of running water, car engines, conversations, kitchen appliances, voices speaking on the telephone, bicycle pedals, crunching leaves, or vacuum cleaners. Earplugs or earmuffs can help, but individuals with hyperacusis often experience a compromised quality of life, including difficulty communicating with others, working or attending school, and completing other daily activities. While there are no specific surgical or medical treatments for hyperacusis, techniques that help people with tinnitus may also help those with hyperacusis, such as sound masking, cognitive behavioral therapy, or a combination.

Tinnitus patients who show signs of hyperacusis.

20 million Whose tinnitus is chronic, or present for more than three months.

2 million Whose tinnitus is debilitating, or disruptive to everyday life.

85 percent Hyperacusis patients who also have tinnitus.

This information is taken from HHF’s website. For references, see hhf.org/spring2021-references. For the latest news and research in these areas by HHF scientists, see hhf.org/research/tinnitus and hhf.org/research/hyperacusis.

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1 in 50,000 People affected by hyperacusis. spring 2021

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managing tinnitus

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What Works for Me

Seeking help for my chronic tinnitus, I turned myself into a human guinea pig. Here’s what I learned. By Col. John T. Dillard (U.S. Army, Ret.) I joined the U.S. Army at age 22 and retired from service 26 years later, in 2001. That was two decades ago, but the hearing loss and tinnitus that resulted from my service have stayed with me, making me part of the two million Americans with debilitating tinnitus, and the 20 million with chronic tinnitus.

This has led me to channel my energy into Hearing Health Foundation’s Board of Directors, where I have been the chair since 2019, as well as the U.S. Department of Defense’s Congressionally Directed Medical Research Programs, where I’ve completed a third year as a consumer reviewer for their Peer

Review Medical Research Program. Tinnitus has no cure, but there are many suggested ways to manage it. Most folks who know me understand my extreme caution against what I consider “snake oil” tinnitus treatments, the ones not scientifically backed. So as I’ve searched for relief over the years, I have acted as my own guinea pig to try to mitigate the symptoms, and I have always followed the science. Believe me when I say I’ve researched and/or tried everything.

Money Spent As a first lieutenant in 1977, John Dillard trained in the Mojave Desert in California. His 26 years of service led to ongoing hearing conditions.

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I began my quest by looking for a natural cure. There are several supplements that purport to treat tinnitus. One that is heavily promoted can even be found on drugstore shelves, citing flavonoid antioxidants as an active ingredient. Others contain ginkgo biloba, a supplement with lots of claims. But for relieving tinnitus, these supplements are not sufficiently scientifically backed, no matter what is claimed. One of the next things I tried was a heavily marketed device that costs several thousand dollars, requiring the patient to listen to baroque music, with a proprietary tinnitus masker supposedly buried within, for some two to four hours daily for 18 to 24 months. Almost all peerreviewed studies of this product were sponsored by the inventor of what was essentially an expensive MP3 player. While there was at least one Cleveland Clinic study reporting that the device’s promotion of habituation resulted in a bit of improvement in some tinnitus patients, the study noted that it also showed no significant efficacy over regular


managing tinnitus

music. And so, no improvement for me. I had encouraged the Regional Veterans Administration in California to sponsor the product for a trial as I began mine. They did, and had the same results. Next even more hard-earned dollars were spent on transcranial magnetic stimulation (TMS), a noninvasive (but very unpleasant) electrical stimulation of the brain used to treat depression using an apparatus cleared by the Food and Drug Administration (FDA). There were several peer-reviewed journal articles finding at least a temporary inhibition of tinnitus in some users. Again, the numbers were barely significant statistically, and the best results were only transient. A doctor in Santa Monica, California, happily administered this to me for a mere $10,000 using his TMS device for treating patients with depression. As I sat with other patients in the waiting room before my next round of what felt like a thousand slaps on the cheek, I felt as depressed as they were. The FDA clears such devices rather easily, as the manufacturer only has to prove safety, not efficacy. This could have been the beginning of a new application of this technology, but after 16 or so “treatments,” I had to quit the protocol early once strange (additional) acoustic hallucinations started occurring in my head! Moving on to less expensive and even less proven therapies, I gave acupuncture a try. There are at least several papers floating around that praise its efficacy for tinnitus. But for me, a couple of treatments were all that were necessary to discontinue feeling like a pincushion. I had the same experiences with direct brain stimulation, cognitive behavioral therapy, a chiropractor specializing in craniosacral manipulation, and mindfulness and meditation recordings.

I was mindful only of the 70-plus decibels of noise I heard inside my head. I found it hard to focus on relaxation when that much hyperactive neuronal activity was taking place in my cranium.

Sound Therapies

A doctor in New York City said he could silence the sound using “noise cancellation” principles, essentially tinnitus pitch-matching (which in itself is a fool’s errand, my tinnitus presenting as a band of frequencies, rather than a single note). I spent another several thousand dollars having his staff make a CD of my tinnitus pitched 180 degrees “out of phase.” To a physicist it sounded plausible, but not to anyone understanding the neuroscience behind tinnitus. I also tried a $500 sound therapy treatment from a nice lady who sent me hopeful emails from Australia—it was essentially modified violin (high frequency) music, but there was no progress for me from it either. Then came a research paper about “notched music” as another potential sound cure that aims to tonotopically remap the brain’s auditory cortex via “notching out” the offending tinnitus frequency from the patient’s favorite tunes, using music editing software. It supposedly takes about a year of listening, two hours daily, according to a peer-reviewed journal article I found. I obtained the needed software and created a suite of over 200 of my favorite digital recordings. After a year of faithful listening, there was also no progress. Speaking of so-called sound cures, I participated in two separate trials of University of California Irvine’s research of sounds to induce “residual inhibition.” But I lost faith after the product was getting marketed and sold through certified audiologists before any peer-reviewed

research was published. No wonder some folks have little faith in the medical industry! Yet I still believe that the truth prevails in the lab and marketplace. So, these various supposed treatments die on their own as crowd-sourced reviews eventually surface in chat rooms and review websites.

Off-Label

Based on my pharmacological research on off-label treatments, I also tried gabapentin, diazepam, nortriptyline, and a host of other drugs, none of which have yet been approved for use with tinnitus. The science is more accurately reported using blinded and more systemic clinical experiments on these medications. So there’s nothing—so far—on the market in the

Tinnitus has no cure, but there are many suggested ways to manage it. Most folks who know me understand my extreme caution against what I consider “snake oil” tinnitus treatments, the ones not scientifically backed. I have always followed the science, and believe me when I say I’ve researched every potential treatment.

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managing tinnitus

hearing health foundation

way of drugs that can treat tinnitus. The experiments are ongoing with promising new ideas to either dampen the hyperactivity that causes the perception of noise when there is none, or to interrupt the affected circuitry, or even to regrow the cochlear sensory hair cells damaged by noise exposure—all of which can lead to tinnitus and a related condition, hyperacusis (sound sensitivity). On the more positive front, while cognitive behavioral therapy—or other techniques to change the way you emotionally react to tinnitus—was not a good fit for me, I know that counseling helps many folks. We do indeed get to choose somewhat how we are going to react emotionally to all things. There’s a bit of “mind over matter” in coping with the aggravating tinnitus. It’s applying psychology to what is definitely not a psychological problem. Also helpful is finding support in a community going through the same experience. Misery does love company. That said, many will say that after a bit of commiseration with other folks, so that you know you’re not alone in your suffering, you come to realize you really just have a condition that you must cope with, and you must go on enjoying life as best you can. It doesn’t take much effort to find someone suffering with something far worse.

The Gold Standard

So what has worked for me? Tinnitus Retraining Therapy (TRT) has been recognized as the gold standard for tinnitus treatments. It was the great otolaryngologist Pawel Jastreboff, Ph.D., Sc.D., a professor at Emory University School of Medicine, who developed the treatment, and when he introduced it in 1990, it included independently reviewed, published research. His 2015 paper, on the occasion of TRT’s 25th 18

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anniversary, notes that the protocol has been shown to be effective for 80 percent of patients, according to the majority of 100-plus studies published since TRT began. For me TRT was many months of using ear-level sound generators, with and without hearing aids. Strangely, the sound generators feed the brain with a broadband white noise that streams just below the level of one’s individually set tinnitus via “minimum masking levels,” which can be estimated with your audiologist. Standard-of-care protocols for TRT call for concurrent counseling sessions to reassure the patient that everything is relative, including their tinnitus in loud or quiet environments, and that not emotionally reacting to tinnitus is the first difficult step to “habituation.” Habituation means getting so used to the tinnitus that you may even fail to perceive it some of the time—first by habituating to the reaction so it is no longer negative and disruptive, and then by habituating to the perception of the tinnitus itself. My research on the subject allowed me to forego that element of TRT, and the white noise generator seems—for me and several others—to load our brains with acoustic sensations, somehow, that result in a kind of residual inhibition of the perception of tinnitus. Isn’t that strange? One woman said to me, “Wait—if I am understanding correctly, you want me to amplify my hearing of normal sounds with hearing aids, and also hear my tinnitus underneath that, and

then add a layer of white noise, too?” She thought that sounded crazy. But for me, that purchase decision (yes, another few thousand dollars) was one I made in about 30 seconds! Nonocclusive, over-the-ear, comfortable sound amplification restores some of my moderate hearing loss to almost typical hearing across the frequency ranges. And a soothing white noise sound tells me I am actually treating my tired brain to a new trick: how to habituate to perception, as Jastreboff aptly put it in his writings. As a result, every third day or so I experience a quiet day. I have no perception of tinnitus other than a strange movement of it away from the ears and into the “back” of my head. What is incredibly helpful to me is that the brain seems to adjust to the tinnitus sound—sometimes for even a couple of days in a row—because the tinnitus sensation is not there. This is key. It means the brain can habituate so the tinnitus is

I’ve never encountered anyone who used Tinnitus Retraining Therapy and did not benefit from it to some degree. While not a panacea, the treatment has been shown to be effective no matter the cause of the tinnitus, which often is not known, and improvements can be seen in one month. The therapy has also been shown to be useful for treating hyperacusis (sound sensitivity) and misophonia (negative reactions to specific sounds).


managing tinnitus

My Advice Thanks to Tinnitus Retraining Therapy, tinnitus is no longer a big part of my life. I’ve moved on, despite the fact that I can hear my tinnitus most days, even in noisy environments. My advice to new folks I encounter who suddenly have an onset of bothersome tinnitus is: » » » » »

Go to an audiologist. Get hearing aids if recommended. If getting hearing aids, add a tinnitus masker function (or if not, get sound generators). If needed, use sound enrichment (such as white noise) when you take them off. Hang in there for 12 to 18 months.

Soon you’ll be able to conquer your tinnitus via “habituation of reaction,” followed then by “habituation of perception” (perception of the noise). —J.T.D.

no longer perceived. There is now ample research data on this, not just anecdotal accounts, to make it the new standard of care for the Veterans Administration within their Progressive Tinnitus Management program for our hearing damaged veterans. (PTM is essentially a staged, progressive introduction to TRT.) I’ve never encountered anyone who used TRT and did not benefit from it to some degree. The first step is, always, to be evaluated by a qualified audiologist, hopefully one who knows a bit about tinnitus and options for treating it as well as hearing loss. While not a panacea, TRT has, according to Jastreboff’s 2015 paper, been shown to be effective no matter the cause of the tinnitus, which is notable because often the cause is not known. And since its introduction decades ago, the better implementation of the therapy has shortened the average time for improvement from one year to just one month. Moreover, it has been shown to be useful in treating both hyperacusis and misophonia (negative reactions to specific sounds).

A Neurological Disorder

We know now that tinnitus is more of a brain problem that typically starts from damage to the ear in the form of noise-induced hearing loss. We need to help the brain heal itself and correct what is actually an auditory “hallucination” of hyperactive neuronal activity. It’s a very resilient, maladaptive feedback loop that works much like learned pain. But while we cannot yet heal the brain, we can take steps like using hearing aids, almost all of which are now equipped with tinnitus noise maskers to help the individual adapt and cope better than ever before. I am still quite hopeful that various pharmacological approaches now being tested may help tamp down this hyperactivity. And it is hoped that when hearing loss is cured through the regeneration of the aged or damaged sensory hair cells in the cochlea, this breakthrough will also help with tinnitus. That’s why, as I remain with TRT, I am committed to Hearing Health Foundation and how it is looking for ways to prevent and cure hearing loss and tinnitus

through truly groundbreaking, gene-level research by a wonderful consortium of top researchers, while seeding the hearing and balance fields with young scientists coming up the research ladder through career-galvanizing grants.

Col. John T. Dillard (U.S. Army, Ret.) is the chair of Hearing Health Foundation’s Board of Directors. He wrote about his experience in the military and how it affected his hearing in the Fall 2017 Hearing Health cover story at hhf.org/magazine. For references, see hhf.org/spring2021-references.

Share your story: Tell us your tinnitus journey at editor@hhf.org.

Support our research: hhf.org/donate.

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advocacy

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Advocating for Relief A high school student with hyperacusis is raising awareness of the sound sensitivity condition. By Jemma-Tiffany Rosewater When I was 8 years old, an audiologist declared that I have hyperacusis, a rare hearing condition that makes everyday noise unbearable. It has no cure. Now years later, loudness is still completely intolerable for me, but I am committed to improving the lives of everyone in my situation through online education and advocacy. My hyperacusis symptoms first became noticeable at age 6, prior to the official diagnosis, when I began to feel pain from loud noises like in the school cafeteria and at weddings and parties. I was generally okay as long as I wore earplugs. At 7, I began experiencing migraines that lasted for up to months at a time and were exacerbated by normal everyday sounds. Unable to go to school, I started home and hospital instruction. I stopped going to stores, restaurants, and parties and became unable to watch TV at a normal volume because I experienced so much physical pain to my head and ears. As the pain worsened, I stopped being able to tolerate the sound of wind blowing or birds chirping. I stopped going outside. My mother took me to a lot of different doctors who concluded I had chronic migraines with extreme sound sensitivity. Almost all dismissed the idea that I was experiencing physical pain from loud sounds and instead believed it was psychosomatic or an emotional disorder. The few doctors who did believe that I experienced physical pain, including my audiologist, forced me to partake in desensitization and sound exposure therapy. This required me to gradually turn up the volume on my electronic devices, participate in everyday activities like school and family dinners, and reduce my use of hearing protection. These treatments only increased my pain level and, in turn, made me even more sensitive to sound. I felt so misunderstood and invalidated. My hyperacusis diagnosis added to the ways I was already differently abled than my peers. I have also had low vision/legal blindness since I was a baby, seizures, sensory processing disorder, and chronic migraines triggered by my hyperacusis. I read Braille and use visual magnification devices such as a closed-circuit television and an audiobook player. Because of my sensory processing disorder, which has been present since I was a baby, I am unable to tolerate the feeling of most clothing. I can only wear extremely soft clothing and slip-on, Crocs-like shoes.

Eventually things did begin to improve slightly after I showed my doctors the more recent research on hyperacusis. We tried therapies not involving sound, because that had caused me more pain, and now I am able to sit in my bedroom without hearing protection, a big improvement for me. 20

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advocacy

Although I am still in high school, I know that I want to dedicate my life to raising awareness and advocating for patients with chronic pain conditions, rare disorders, and hyperacusis. I have already begun educating people about my unique experiences with sound through Hyperacusis Awareness, a support initiative I started that connects the community and educates policy makers and doctors. In the years that followed, I was in and out of school and suffered tremendous emotional distress as a result of being in pain all the time. I’ve avoided or made drastic adjustments to situations that may seem harmless to people without hyperacusis. For example, I’ve had difficulty eating dinner in the kitchen because the sound of the refrigerator humming can cause throbbing pain on my forehead and the side of my head above my ears. I have been unable to sleep in my own bedroom because the noise of traffic from the road can bother me too much. I have even slept in my bedroom closet for maximum insulation after my parents soundproofed the walls of the room. My mom drives us away from the house when landscaping work is taking place nearby because the power tools have made me feel like I’m being punched in the forehead and I develop a migraine. Eventually I decided to take matters into my own hands and conducted my own research on hyperacusis, which I presented to my doctors. Things did begin to improve slightly after they read some of the more recent science about hyperacusis and the use of different therapies that did not involve sound. I started using various electrical nerve stimulation devices on my ears and head: a TENS (transcutaneous electrical nerve stimulation) unit; a Cefaly neurostimulation headband; a PEMF (pulsed electromagnetic field) device; and an Alpha-Stim electrotherapy device. All of these devices deliver low-level electrical stimulation or electromagnetic fields to nerves or the brain. They helped reduce my pain level, so that I am now able to sit in my bedroom without any hearing protection, a big improvement for me. Although I am still in high school, I know that I want to dedicate my life to raising awareness and advocating for patients with chronic pain conditions, rare disorders, and hyperacusis. I have already begun educating the world about my unique experiences with sound, primarily through a support initiative I started that is called

Hyperacusis Awareness. It connects people with the condition and educates policy makers and doctors. Hyperacusis Awareness has an active website, Facebook page, Instagram account, and YouTube channel, through which I share information and organize virtual meetings. I am especially passionate about being an empathetic voice for children, teenagers, and young adults living with hyperacusis. In addition to Hyperacusis Awareness, I conduct virtual training for people who interact with someone who has hyperacusis. I am an advocate for Rare Advocates Representing Everyone, a patient advocacy group for people living with chronic, invisible, mental, or rare diseases, and a member of the Every-Life Foundation’s Young Adult Representatives of Rare Disease Legislative Advocates. I’m working on a novel in which one of the characters suffers from hyperacusis. I also closely follow the work of Hearing Health Foundation’s partner Hyperacusis Research Ltd., and look forward to participating in a clinical trial for hyperacusis once I reach 18.

Jemma-Tiffany Rosewater lives in Maryland. For more about Hyperacusis Awareness, see hyperacusisawareness.wordpress.com.

Share your story: Tell us your hyperacusis journey at editor@hhf.org.

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living with tinnitus

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Harnessing a Hub

How a tinnitus community director pays it forward after learning to live with tinnitus. By Hazel Goedhart I remember when I first heard it, over three years ago now. I was lying in bed and suddenly it was there, a highpitched screeching sound. It scared me, because I instantly realized this was tinnitus and it might be with me for life. I had heard about tinnitus, or hearing a sound without an external source. A friend once mentioned to me that he had had it since childhood. (He seemed fine with it.) And there had been a big news story in the Netherlands, where I lived at the time, about a woman whose euthanasia request was granted on the basis of her suffering from extreme tinnitus and hyperacusis (sound sensitivity). I never thought that would happen to me but still, how could I ever learn to cope with this awful noise in my head? The hardest to cope with was simply that the noise was always there. No respite, no escape. I had never been a good sleeper, but bedtime now became an ordeal of many hours, while trying out various masking sounds (most of which only seemed to aggravate my tinnitus). Within a week I was completely exhausted and had to admit this was not going to be resolved quickly. I called in sick from my job, and it ended up being several months before I could return to work. In the meantime, I went to the doctor multiple times, seeing different general practitioners. They each seemed to have a different response. One of them was convinced my tinnitus could not be chronic, because I was too young (I was in my late 30s and have since learned that chronic tinnitus can occur at any age). Another seemed to insinuate it was all in my head. I had to beg for a referral to an ENT (ear, nose, and throat specialist), which I later learned should have been standard practice. As it turned out, there was no clear underlying ear problem in my case, other than hearing loss. The strange thing about the hearing loss was that it was mostly in my right ear. The ENT and audiologist couldn’t explain my one-sided hearing loss but mentioned that sometimes this can be the result of a viral infection. I guess I will never 22

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After she became habituated to her tinnitus, Hazel Goedhart wanted to help others as a volunteer at Tinnitus Hub.

know, and I have long since let go of searching for the cause of my tinnitus. Then came the hardest part: learning to live with it. This is what all the healthcare professionals will tell you to do, typically in an offhand manner that suggests no difference from learning to live with a benign mole. I decided to do whatever it takes to get used to my tinnitus. Of course, I still hoped it would just disappear, as it does for some people. But I knew I must be prepared for the other possibility as well. As it turns out, years later I still have not experienced a single moment of complete silence. But thankfully, there are many moments and even entire days that pass without me consciously noticing my tinnitus. This is called habituation, a natural adaptive process that occurs in the nervous system when a repeated stimulus causes less and less of a response over time. This process allows us to filter out background noise from our conscious experience, focusing only on sounds that are considered important. An example of habituation is someone living next to a railway track who gets used to


living with tinnitus

I would never say, just because I found a way to coexist with my tinnitus, that I know all the secrets. I see YouTube videos and online courses being offered, which irks me because—apart from the obvious fact that some are clearly taking advantage of a vulnerable group—I strongly believe that everyone’s journey with tinnitus is different and there is no one-size-fits-all solution. trains coming by many times per hour and eventually no longer consciously hears the trains. It was a great relief to notice habituation setting in. I don’t know if I did anything specific to help it along. I did an awful lot of yoga, walking, and meditation. That might have helped, or it might have just been the passage of time that made me feel better. I would never say, just because I found a way to coexist with my tinnitus, that I know all the secrets. I see YouTube videos and even expensive online courses being offered by people who claim to have some kind of ultimate knowledge, which irks me because—apart from the obvious fact that some of these offerings are clearly taking advantage of a vulnerable group—I strongly believe that everyone’s journey with tinnitus is different and there is no one-size-fits-all solution. Something that certainly helped me was to engage with others on the Tinnitus Talk forum. It helped to know that I was not alone, and not crazy for struggling with this. It also helped me immensely to read the Success Stories section of the forum, with literally hundreds of stories from people who, after going through extreme hardship, ultimately found their own ways of coping with the condition. I made real connections with peers on the forum that endure to this day. Once I felt better, I wanted to pay it forward. I contacted Tinnitus Talk’s management and found out it was run by a small group of volunteers on a shoestring budget. I also discovered, to my excitement, that they did a lot more than just the forum, like data collection for academic research. Today, in addition to my day job as a sustainability expert, I am the co-director of Tinnitus Hub, a U.K.-based nonprofit with a global reach. We offer peer-to-peer support through the Tinnitus Talk forum, educational videos, and a podcast. And we promote cure-focused tinnitus research through citizen science, such as involving volunteers in data analysis and gathering

community input to inform research directions. I have observed, in myself and others, that habituation is not a black-and-white state. Some achieve habituation in a few months while for others it takes years. It is possible to be partially habituated, being fine on some days and struggling on others. And one can have setbacks due to, for instance, new ear trauma or stressful life events. I have also learned that unfortunately not everyone can or does eventually habituate. Hyperacusis can be a compounding factor in all of this, which in its worst form means everyday sounds at typical volumes cause pain. For all these reasons, I strongly believe that a cure for tinnitus is needed. Even though I count myself lucky to live a good life with tinnitus, I still would prefer to be rid of the noise in my head. But most of all, I want the cure for the many others who are less fortunate than me and struggle on a daily basis. Until that day comes, the best thing we can do is stick together and help one another.

Hazel Goedhart is a director and the chief strategist for the U.K.-based organization Tinnitus Hub, founded by Markku Vesala. For more, see tinnitushub.com and tinnitustalk.com.

Share your story: Tell us your tinnitus journey at editor@hhf.org.

Support our research: hhf.org/donate.

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meet the fundraiser

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Breaking a Sound Barrier

To create awareness about hearing loss and share my passion for the piano, I teach American Sign Language and music through my organization QuiaPlus, Latin for “know more.”

Share your story: Tell us why you support HHF at editor@hhf.org.

By Ankitha Lavi

Playing the piano is my passion. I took lessons from ages 6 to 14 and now I teach the instrument to my own students. Playing the piano has been helping me greatly throughout the chaos of my high school years and the COVID-19 pandemic. It relaxes me and gives me a sense of joy whenever I am stressed. In September 2020 I held an online fundraiser for Hearing Health Foundation (HHF). I don’t live with a hearing or balance condition and do not have any family members affected. Rather, I became inspired to help after a very memorable elementary school experience. In 4th grade, for the first time in my life, I met students who all lived with hearing loss. They used American Sign Language (ASL) to communicate and relied on transcribers in the classroom. I wanted to engage with them and make sure they felt included and socially connected in our school, but I felt powerless. I was unable to simply ask “how are you?” to help bridge the gap between students with hearing loss and those with typical hearing. Since then I have also met students who use hearing aids. I realize that these devices are a helpful resource, but greater acceptance of them is urgently needed. Reducing the stigma around hearing aids would make life more comfortable for my peers who wear them. I quickly understood that these students, whether they use ASL or hearing aids, are not able to listen to music the way that I do. The piano is so amazing to me, and students with hearing loss are missing out on some of its beauty. Eager to break the barriers that persist between the hard of hearing and hearing communities, I learned ASL in high school and I am now teaching this amazing language to others—along with piano—for free through my organization, QuiaPlus. It’s Latin for “know more,” and I think it fits because you’re learning different activities. To help create more equitable access to sound, I ask the parents of my students to please donate to HHF. I chose HHF because it appears to be the most credible organization helping people with hearing loss. I was impressed to see that HHF’s research projects and outreach methods help a large portion of this community. The scientists that HHF funds are working to create a world where everyone can choose to hear without limitations. With more research on hearing loss and related conditions, I hope that everyone will be able to hear music the way that I do. Awareness of students with hearing loss has made me realize that people communicate and hear in different ways. It has also made me look at the world with more empathy toward others who may not be the same, and how we can all learn to move past communication barriers.

Ankitha Lavi lives in Texas. For more, see QuiaPlus at quiaplus.org. Support our research: hhf.org/donate.

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Hearing Health Foundation 2021 Reader Survey Hearing Health Foundation would like to hear from our community to better serve your needs. Please fill out this survey (also accessible at hhf.org/survey) and mail it back using the envelope. Thank you for taking the time. What is your level of hearing loss? Mild Moderate Moderately severe Severe Profound I don’t know I don’t have a hearing loss

2. If applicable and known, please indicate the cause of your hearing loss. Check all that apply. Age-related hearing loss Noise-induced hearing loss Genetic or hereditary factors (e.g., Connexin 26, Usher syndrome) Medication Otosclerosis Head trauma or tumor (e.g., acoustic neuroma) Viral or bacterial infections (e.g., ear infections) I don’t know Other: _________________ 3. Do you use hearing assistive technology (e.g., an FM system, hearing loop, PockeTalker, captioned telephone)? Yes No 4. Do you wear hearing aids? Yes No 26

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5. Do you plan to purchase new hearing aids? In the next 3 months In the next 6 months In the next year I don’t plan on purchasing new hearing aids 6. What is your primary source for information about hearing aids? Hearing healthcare professional Hearing Health magazine Online research Other: _________________ 7. Do you wear a cochlear implant (CI)? Yes No 8. Where do you read Hearing Health magazine? Print Online Both 9. How did you hear about the magazine? Check all that apply. I subscribe Doctor’s office Family member Friend Social media Other: _________________

10. Please indicate your age. Under 18 years old 18 to 34 35 to 54 55 to 74 75 or older 11. What is your employment status? Employed or homemaker Out of work or looking for work Student Unable to work Retired 12. What is your pretax household income? Under $25,000 $25,000 to $49,999 $50,000 to $99,999 $100,000 to $149,999 $150,000 or more Prefer not to answer 13. Are you a veteran or active military service member? Yes No We’d also like to hear responses from your family and friends. The survey can be completed online at hhf.org/survey. If you have any questions, please contact us at 212.257.6140 or info@hhf.org.

complete the survey online at hhf.org/survey

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6 Ways to Make an Impact Today and Tomorrow You can make a meaningful difference in hearing loss research. Whichever method below you choose, every gift to Hearing Health Foundation (HHF) counts.

The De Francescos named HHF in their estate plans.

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Please Send a Decoder

A retired scientist rediscovers a love for writing poetry, especially as a way to share her experience with hearing loss and tinnitus. By Sylvia Byrne Pollack I have worn hearing aids since the 1980s but my story begins long before then. In 1945 both my eardrums ruptured. Oral penicillin was not yet available. So there I was in the local hospital at age 4, being injected with the “new” antibiotic every four hours. I recovered well enough to flourish at school, albeit always sitting in the front row. I think that is when I began to watch faces closely, to read lips. Music was an important part of my family’s life. I took piano and flute lessons and sang in the church and school choirs. My hearing was subpar but not enough to keep me from making and enjoying music. I thought I might major in flute in college but before I got that far, Russia launched Sputnik. I changed course, and decided to study science. I earned a B.A. in zoology from Syracuse University, then a Ph.D. in developmental biology from the University of Pennsylvania. In the following few years, I started a family (two wonderful sons!) and developed a career in cancer research—applying for grants, writing and presenting scientific papers, traveling to meetings, teaching, and reviewing grants for the National Institutes of Health. But by the time I was 40, I could no longer ignore the effects of my hearing loss. I missed much that was said in noisy lecture halls, and in the restaurants and pubs where some of the most important scientific exchanges took place after the regular sessions ended. I didn’t hear the beginnings of some sentences or the endings of others. I felt more and more isolated. I thought the problem was me, maybe a personality problem like shyness or fearfulness. At that point in my life, I didn’t appreciate the toll the struggle to hear and understand was taking on me. Years later, I wrote the poem “Prayer Falling on Deaf Ears” (published in “Clover: A Literary Rag” in 2013):

By the time I was 40, I could no longer ignore the effects of my hearing loss. I missed much that was said in noisy lecture halls, and in the restaurants and pubs where some of the most important scientific exchanges took place after the regular sessions ended. 28

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Prayer Falling on Deaf Ears Dear God Please send a decoder, an angel with mellifluous voice to perch in the rim of my ear. Make her multi-armed so she can catch, parse and juggle the staccato bursts of racket, soaring sibilants that pass for human speech. Let her have a device to analyze the incoming cacophony, assemble syllables. Give her an algorithm to detect possible words (in English), try them out for meaning in the context of a rapid conversation. What I’m saying, God, is that she must be fast, perceptive, imaginative and indefatigable. Try her out on those words. If you can’t detail an angel to me, perhaps you can put video displays on the forehead of each person I meet. Like supertitles at the opera, their words will scroll gently across, riding the wrinkles. If you’ll do this, I promise to stop nodding inanely, laughing or looking serious at the wrong time. I will be a credit to your handiwork. If you decide to answer me, God, please stand squarely in front of me. Let me see your lips when you speak.


books

I just got new devices that are rechargeable—no more fumbling with batteries too small and slippery for arthritic hands! I asked those hands to learn American Sign Language but they have not been able to master the shapes. I think if I work at it more, I might “speak” with a heavy accent. My hearing was diminishing, and my tinnitus was increasing. I tried to get family members to repeat things more slowly, not louder, when I missed what they said. I tried to explain it was a matter of assembling syllables into actual words, then words into sentences. Despite all this, my career in tumor immunology continued. I became a research professor at the University of Washington School of Medicine. I went back to school part-time for a master’s degree in counseling from Antioch University Seattle and did both basic research and student counseling in the School of Nursing at UW. After a bout with cancer in 2000, I decided to retire from academic life. I got my first pair of hearing aids in 1985 when I was 45 years old. The aids helped but were far from perfect, amplifying distracting background noise as well as conversation. I’ve lost count of how many generations of hearing aids I’ve been through in the past 36 years but there has been a steady improvement during that time. I just got new devices that are rechargeable—no more fumbling with batteries too small and slippery for arthritic hands! I asked those hands to learn American Sign Language but they have not been able to master the shapes. I think if I work at it more, I might “speak” with a heavy accent. After a life-altering trip to Antarctica in 2007, I decided to return to a former passion, writing poetry. I took classes, found groups to meet with for critiques, and started publishing in print and online literary magazines. One of my “Poets on the Coast” poetry sisters, Mary Ellen Talley, was a school speech and hearing specialist. She helped me “own up” to my problem instead of joking about it or minimizing it. I wrote a series called “The Deaf Woman Poems.” Some of those are included in my full-length poetry collection, “Risking It,” published by Red Mountain Press in April 2021. Mary Ellen told me about Hearing Health. I wrote to the magazine and received such a warm welcome about sharing my story. It’s nice at age 80 to feel part of this group, not alone, not cut off from others by deafness or by lack of understanding. 85068 Red Mtn_C.indd 1

Sylvia Byrne Pollack lives in Seattle. Her book “Risking It” is available through Red Mountain Press, redmountainpress.us, and local bookstores.

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The cover of Sylvia Byrne Pollack’s book of poetry features a photo of a cottonwood tree in Santa Fe, taken by her editor. People leave “treasures” in the hole, like an altar.

Share your story: Tell us your hearing loss journey at editor@hhf.org.

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How Far We Have Come Pioneering educators in the 1970s and 1980s created a new vision for infants and toddlers with hearing loss, emphasizing early identification and family training—revolutionary ideas then, best practices now. By Jayne Sowers, Ed.D. 1980, Atlanta. “Can you help us? Our 2-year-old has huge tantrums. She throws plates of food, she screams and yells. She doesn’t talk yet. We really need help!” 1977, Chicago. “I’ve been working with these 12-yearolds for two years. I know they are deaf, but why aren’t they learning to read?” 30

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1976, Portland, Oregon. “The 4-year-olds in my preschool class for the deaf are doing well—they are picking up language better than the kids who are deaf who didn’t start school until they were 6. Why is that?” These were the questions being raised by teachers of the deaf in the late 1970s and early 1980s.


education Opposite page: Infant Hearing Resource specialist Jayne Sowers with two of her learners with hearing loss, including Katie on the left, dressed up for Graduation Day. Graduation occurred in August, when the children turned 5 and could start kindergarten in the fall. IHR helped these children develop language skills well before they reached school age.

In the early 1970s, only a few college programs for training teachers of the deaf existed in the U.S. Student teaching and practicums occurred at the states’ residential schools for the deaf. Rarely did public schools accept students with disabilities, including those who were deaf. Hearing aids were “body aids”—boxlike contraptions measuring 3 by 5 inches and strapped around the chest. Any neurological understanding of hearing loss in young children was in its infancy. Teachers, parents, audiologists, and doctors sought answers on what and how children with hearing loss could hear, using any hearing that remained to learn the English language. In 1971 in Portland, Oregon, teachers of the deaf Nancy Rushmer and Valerie Schuyler—working with key stakeholders comprising physicians, audiologists, and community members—established Infant Hearing Resource (IHR). The nonprofit’s purpose was to address the needs of children with hearing loss so those children could develop language skills well before they reached school age. Rushmer and Schuyler asked themselves: What would the new program look like? What age would the students be? They knew babies and toddlers would be too young to be in a school all day. They concluded that the answer lay with the child’s family. The IHR program would focus on the parents as the child’s first and best teachers—a new approach and a critical change in educational practices. With the instructional philosophy decided, the curriculum and instruction came next. IHR established these key program components: » A family/parent approach with specialists modeling and then coaching parents, siblings, and others in using play-based activities and daily routines through which the infant/toddler would learn to communicate. » A “whole-child approach” integrating cognitive, language, social-emotional, and physical development. » The use of auditory, receptive, and expressive language goals and lessons for the child with hearing loss that follow the same developmental milestones as their hearing peers. » A recognition of and provisions for families encountering the stages of grief upon learning their young child has a hearing loss.

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An emphasis on collaboration with other specialists for children with syndromes and multiple disabilities. After two years of implementing these key components, the educators found that their program was viable: All 12 children with hearing loss, from infants to age 4, made significant progress in all areas of development.

Sharing the Success

The success of the young learners through the use of language-based, developmentally appropriate practices showed the IHR staff that the younger the child with hearing loss, the better and faster they could learn—a new and amazing discovery. The IHR approach was working. The next step was to share their program more widely. In 1976, the U.S. Department of Education offered nationwide funding opportunities to a few selected programs that were currently working with families of infants and toddlers with hearing loss. IHR was one of the six selected programs. The first of several three-year federal grants provided for IHR staff to train specialists who would then teach families of infants and toddlers with hearing loss. IHR staff interviewed applicants from across the U.S. who were teachers of the deaf or audiologists. Each year six were selected to enroll in the nine-month program. Working alongside IHR staff, the trainees learned proven techniques for teaching young children with hearing loss, eventually earning a university certificate: “Parent-Infant Specialist: Hearing Impaired.”

Learning as a Family

I was a teacher of the deaf in Atlanta in 1979, and the first very young child I worked with was Alison, age 2, whose parents needed help with her unruly behavior. Bubbly and nonverbal, Alison entered the audiology suite with me where a clapping monkey (then a state-of-the-art method to validate conditioned responses in young children) verified Alison’s hearing loss. Her lack of or intermittent responses helped explain her challenging behavior. As her parents watched through the window, I could understand their mixed emotions: “Oh no—our baby cannot hear! But we finally have an answer to why she acts like she does.” The audiogram showed a sloping bilateral, moderate-to-severe hearing loss, indicating Alison could hear only about half of the words spoken to her. A few a publication of hearing health foundation

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education

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Along with daily play and routines to foster communication, IHR learners like Alison received auditory and language training.

weeks later, as the audiologist placed the hearing aids in Alison’s ears, her eyes widened and her smile broadened as she heard the sound of her mother’s voice for the first time. We met three afternoons a week to help Alison and her family learn how to use her hearing aids and develop her oral language, and she made excellent progress. When her hearing loss was first identified at age 2, her speech and language were at the level of a 9-month-old. But after two years of child-based, interactive lessons, Alison caught up to her hearing peers. By the time she was 5, the public schools were ready for her and she was ready for them. She succeeded orally without the need for sign language—thanks not only to her residual hearing but also to early fitting of her hearing aids and her auditory and language training. With the success of this one child, I sought out additional education to advance my skills for teaching young children with hearing loss. I was selected to train at IHR in 1981, eventually joining the staff.

Hearing and Balance

In the early 1980s IHR worked closely with nearby institutions Good Samaritan Hospital and Oregon Health & Sciences University. Doctors and researchers were studying the relationship of sensorineural (inner ear) hearing loss to the vestibular (balance) system in young children. This was good news for 2-year-old Katie, my second young client. Her mother said she seemed to hear only intermittently, but this did not concern their family physician. After months of searching, Katie’s mother found an audiologist who tested infants and toddlers, which in turn led her to IHR. Several visits to the audiologist revealed a severe bilateral hearing loss. But Katie’s mom voiced concern about Katie sometimes stumbling or weaving while walking. Frequent hearing tests determined Katie’s hearing loss was worsening over time. Back then, the connection between hearing and balance was starting to be uncovered. William House, D.D.S., M.D., was pursuing the first surgical treatment for debilitating vertigo, often a symptom in Ménière’s disease, and he later developed the first cochlear implant. Despite her bouts of imbalance and nausea, Katie and 32

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her family regularly attended IHR three times a week. Due to Katie’s progressive hearing loss, her parents opted for the addition of sign language to the lessons. Three months later, at age 2 1/2, Katie signed “water” and uttered “wa-wa” as her first word as we poured pitchers of water into a baby bathtub. It was a tearful moment for all in the room. Katie learned new signs daily. They provided a necessary bridge for her to communicate her wants and needs and to understand what was being requested of her. Our IHR home visits accommodated evenings where grandparents, neighbors, and playmates could learn sign language as well. When she turned 4, Katie transitioned smoothly to her peers’ classroom for the hearing impaired in the public schools.

Changing Views

With these successes, why weren’t children like Alison and Katie identified as having a hearing loss much earlier in age? Mostly we just didn’t have the research-backed knowledge like we do now. Up until the early ’80s, research on infant brain development was minimal. The role of early brain stimulation was unknown. The term “early intervention” did not yet exist—in fact, not until 1986 did the term exist, when it became part of Public Law 99-457, an extension of the 1975 Public Law 94-142 Education for All Handicapped Children Act. The new law for the first time specifically addressed infants to 4-year-old children, stating that public schools must provide “early intervention for infants and toddlers with disabilities”—15 years after IHR opened its doors. A second reason was the family practitioner’s understanding of infant and toddler hearing development. Educators of the deaf and audiologists repeatedly heard from parents of newly identified 2- and 3-year-old toddlers with hearing loss that their family doctor had “tested” the child and declared that the hearing was typical. This led IHR to work with Oregon Health & Sciences University to train family physicians to conduct proper hearing tests. For each new class of residents, IHR staff demonstrated how not to do a screening. Doctors learned that slamming a door creates vibrations the child can feel so they turn toward the “sound”; by ringing a bell behind a child, the doctor may cast a shadow visible to the child;


education

The success of the young learners through the use of language-based, developmentally appropriate practices showed the IHR staff that the younger the child with hearing loss, the better and faster they could learn—a new and amazing discovery. and hitting a tuning fork may be visible within the child’s peripheral vision. By the 1980s, groups formed across the U.S. to demand that formal hearing screening of children occur much earlier than was required—in first grade. In 1993, the National Institutes for Health recommended universal hearing screening of all newborns. By 1999, most states passed legislation for mandatory newborn hearing screening before the infant was released from the hospital. IHR along with many organizations like Hearing Health Foundation advocated for universal newborn hearing screening. This work continues today, as seven states still lack screening legislation and 35 percent of states that do have screening laws do not require screening all newborns.

Identifying Infants

Revolutionary changes in legislation and technology continue to improve the lives of children with hearing loss and their families. In the past few decades, we have seen auditory brainstem response testing for infants; cochlear implants; IDEA (Individuals With Disabilities Education Act) requiring public schools to serve children with disabilities from birth through age 21; closed captioning; automated speech translation; powerful wireless hearing aids; cochlear implants including for patients at age 9 months; and specially trained early intervention teachers. The passage of IDEA in 1975 served as a turning point for children with disabilities, especially those ages 0 to 4, as local public school districts began to provide services rather than depending on small, nonprofit agencies. These programs reflected the proven instructional practices and methods developed by IHR and related groups. As for the two young learners in this story, I am still in touch with both. Through Zoom and Microsoft Teams (current examples of how technology allows for accessibility), I was able to catch up with them in hourslong conversations. To help with communication, one uses speechreading and the other uses American Sign Language as well as speechreading. Alison completed her college degree and has worked for many years as an accountant at the Jimmy Carter Center in Atlanta. She and her husband have two girls. Katie received a master’s degree and works as a teacher of special education at a residential school for the deaf, and

she and her husband operate a house for adults who are deaf and have medical issues. They have two young boys. Alison and Katie represent the first cadre of truly “young” children with hearing loss to receive an early education, which is now known as a critical time of language and communication development. These children gained the academic knowledge and social practices to move seamlessly between the hearing and deaf worlds, and are making valuable contributions to their communities. And IHR? With the IDEA amended in 2004, the bar was raised for local schools to provide services for children from infants to age 21 so the need for other private agencies was no longer necessary. IHR closed its doors. Its work was done. Opportunities for young children with hearing loss came about because a small group of pioneers advocated for young children, realizing the needs of the whole family, raising private funds to maintain their programs, and working in cooperation with both the medical and socialemotional fields. Let us take a minute to acknowledge and appreciate those teachers of the deaf and audiologists who believed that young children with hearing loss should and could be taught from birth in their family environment, just like their hearing peers.

Among the first few dozen Infant Hearing Resource specialists, Jayne Sowers, Ed.D., is an educational consultant and lives in Indiana. She sincerely thanks Valerie Schuyler, who founded IHR with Nancy Rushmer, for help with this article.

Share your story: Tell us your hearing loss journey at editor@hhf.org.

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planned giving

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REALIZING Your Charitable

VISION

Careful strategy and common sense can help ensure that your charitable dollars will be utilized the way you want. By Elizabeth M. Sommer

For many individuals, charitable giving is an ongoing part of life. For others, it’s a future goal tied to financial success and building a legacy. Approaches to giving vary considerably, as they are aligned with personal values, resources, and practical issues. However, what all types of philanthropy can benefit from is a structured approach, thorough due diligence, and attention to the process of giving, both to capitalize on tax benefits and to assure that the gifts are used effectively. Here we focus on some ways to get the most impact from your charitable dollars.

Once you find a charity you’d like to support, you may want to start with smaller regular gifts—for example, contributing to a scholarship fund or other need, monitoring the progress of the organization, and assessing how you feel about the experience over time. If interested, you can look to develop more contacts within the organization, and perhaps become involved on a personal level.

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Becoming Comfortable With a Charity

Whether for lifetime gifts or bequests at death, via direct or more structured approaches, a key first step in any charitable giving program should be due diligence. Assuming you have a charity in mind, you should look to answer some basic questions: How efficient are its operations? How large a portion of donations go to good works, as opposed to fundraising expenses or overhead? A rule of thumb is that no more than 25 percent of revenues should be devoted to administration, but this really depends on the type of charity involved. For example, a museum will likely be more costly to run than a soup kitchen. Also, how effective is the charity at investing its own assets? Likely it will make you feel better about giving if you know the organization is a successful steward of its assets. Other questions worth addressing concern the makeup of the board, the charity’s overall financial condition, and whether it has any history of controversy. Getting this information should be relatively straightforward, through the use of IRS Form 990, which charities above a certain size must file with the federal government, as well as charitable databases. Faith-based organizations don’t have the same disclosure requirements, but should be willing to provide ample information if asked. If you have more substantial gifts in mind, that should increase your access to organizations for more detailed vetting.


planned giving

Where to Find Charity Ratings » The BBB Wise Giving Alliance provides free analysis of national charities, evaluating them against its comprehensive Standards for Charity Accountability, at give.org. » Charity Navigator rates nonprofits on financial efficiency, at charitynavigator.org. » GuideStar provides access to charities’ tax filings as well as information on faith-based nonprofits, foundations, and others, at guidestar.org. » Other sources for ratings are CharityWatch, charitywatch.org, and Consumer Reports, consumerreports.org. HHF is proud to consistently earn top marks from all of these charity rating organizations.

Even if you are comfortable with the results of your due diligence, it may make sense to take things slowly in terms of financial commitments. You might start with smaller regular gifts—for example, contributing to a scholarship fund or other need, monitoring the progress of the organization, and assessing how you feel about the experience over time. If interested, you can look to develop more contacts within the organization, and perhaps become involved on a personal level.

Putting Conditions on Your Gifts

Assuming you have all the information you need and are comfortable with an organization, you can simply make a general donation, or you may be able to specify how you would like the funds to be used. In some cases, an organization (like a university or medical center) might have multiple gifting options: to the general fund, a building fund, scholarships, or other needs. Let’s assume, however, that you have very specific interests within the umbrella of the group’s mission that are not covered by the more general categories provided by the fundraising office. What do you do then? Depending on the organization, it may be possible to attach strings to gifts—to direct funds to education of underprivileged youth, to the study of autism, or to the construction of low income housing, to name some examples. And although charities typically prefer unconditional gifts, they often enter into giving agreements with some donors outlining the terms. These terms may include the potential use of the funds, performance milestones, and, importantly, what happens if the gift becomes irrelevant. For example, if your donation was made for the creation of a computer science chair at your college, but the project was later abandoned, what happens to your donation? Various court cases have dealt with situations like this, and the best way to avoid any misunderstanding or conflict is to be explicit and specific in your donation

documents: for example, calling for the redirection of the money to another specific need, to the general fund, or for a return of the assets to you as the donor. Retaining a lawyer to work with the institution on drafting the documentation makes a lot of sense. Keep in mind that if you get too specific in your conditions, the charity may choose not to accept the gift, whether because of constraints on flexibility, deviation from its core mission, administrative costs, or negative social implications. Also, you need to think about whether you want to hamstring the organization if it faces more pressing needs for your assets than the original designation. Conditions can have a tax impact as well. For example, if the gift can revert back to you, in some circumstances it may not be considered an immediate, charitable gift for which an income tax deduction is available. The qualitative benefits of philanthropy (social impact, satisfaction, and teamwork with family members, to name a few) can be combined with sensible planning techniques to create a winning scenario for you and the charities you seek to benefit.

This originally appeared on the Neuberger Berman Group LLC website, at nb.com. Elizabeth M. Sommer is the chief fiduciary officer and head of personal trust in the New York office of the Neuberger Berman Trust Company. The “Neuberger Berman” name and logo are registered service marks of Neuberger Berman Group LLC. ©2021 Neuberger Berman Group LLC. All rights reserved. For HHF’s financial statements, see hhf.org/financials-accreditation.

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design

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The Salk Institute, founded by the creator of the polio vaccine, is designed to encourage the fusion of art and science.

In Search of Quiet

The COVID-19 pandemic inspires a fresh look at “biophilic design” that supports quiet contemplation and communing with nature to inspire as well as heal. By David M. Sykes of the COVID-19 pandemic, it’s more timely than ever. The 2002 meeting led to the founding of the Academy of Neuroscience for Architecture, a division of the American Institute of Architects. ANFA’s international conferences take place annually—at the Salk Institute.

Biophilic Design

Jonas Salk, M.D., famously discovered the vaccine that ended the polio pandemic. Born in New York, one of the world’s noisiest cities, he experienced a creative awakening during a visit to Assisi, the ancient town in the central Italian region of Umbria that has drawn pilgrims for a thousand years, and the home of St. Francis. Assisi’s quietness, solitude, and beauty captivated Salk and prompted a breakthrough in his thinking, leading to his successful polio vaccine. To emulate his Assisi experience, he founded the Salk Institute for Biological Studies in 1966, near San Diego. There, he and architect Louis I. Kahn designed a quiet, timeless, Socratic-style academy facing the Pacific Ocean to encourage scientists and humanists to mingle, escape disciplinary silos, and ponder what Salk called “bio-philosophy” or “biophilia”— the fusion of art and science. Salk died in 1995. In 2002, his foundation convened a meeting of neuroscientists and architects at the National Academy of Sciences’ peaceful retreat in Woods Hole, Massachusetts, on the edge of the Atlantic. Leading neuroscientists and architects met for the first of a series of transdisciplinary meetings to explore how buildings can be designed to be “quiet, healthy, healing spaces” that can stimulate, inspire, and even heal residents—an aspiration pursued by the ancient Greeks. After this year 36

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Salk’s ability to clear his mind thanks to being in a pretty, peaceful setting helped spark the “biophilic design” movement, according to Esther Sternberg, M.D., a neuroscientist, in her book “Healing Spaces.” In this elegant 2009 book, now a classic, Sternberg describes how “healing” and “inspiration” work, the role of the brain, and how quiet surroundings can stimulate recovery from illness and spark creative insight. In addition to citing research on the physical and physiological effects of sound/noise and color/shape, she shares science that underscores the benefits of meditation spaces and why meditation is valued in many societies. The Woods Hole meeting is celebrated as a moment of extraordinary awakening. Sternberg writes: “The remarkable thing is that the fields of neuroscience, immunology, psychology, architecture, and engineering have reached the point where scholars and practitioners are ready to talk to one another and learn from one another. In so doing, they will come closer to answering questions about the effects of place on healing.”

Shared Spaces

Who owns most of the “built environment” where we live and work? Government agencies and corporations. Together, they own and manage huge real estate portfolios: office buildings, condominium towers, hospitals, places of worship, malls, research and development labs, even whole residential neighborhoods. Managers and corporate leaders who are interested can now dive into the book “Healthy Buildings,” by Joseph Allen, D.Sc., and John Macomber, both at Harvard. In this April 2020 book, the authors address a very real concern: How do work environments—whether offices,


design

Four Biophilic Buildings »

The Salk Institute for Biological Studies in California, by architect Louis I. Kahn, at salk.edu.

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Khoo Teck Puat Hospital in Singapore, at ktph.com.sg.

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Thorncrown Chapel in Georgia, designed and built by architect E. Faye Jones, at thorncrown.com. Jones, who apprenticed with Wright, codified and taught a set of nature-centered design principles nearly identical to the ones spelled out by “Healthy Buildings” authors Allen and Macomber.

Fallingwater in Pennsylvania, designed as a private home by architect Frank Lloyd Wright, at fallingwater.org.

photo credit (headshot): m. ascher 2019

Fallingwater by Frank Lloyd Wright.

hospitals, places of worship, or homes—affect the health and productivity of the occupants? If you find yourself feeling tired during a meeting, their answer is blunt: “That’s because most conference rooms are not bringing in enough fresh air. When that door opens, it literally breathes life back into the room. “But there is a lot more acting on your body that you can’t feel or see,” they continue. “From our offices and homes to schools, hospitals, and restaurants, the indoor spaces where we work, learn, play, eat, and heal have an outsized impact on our performance and well-being.” They list the “9 Foundations of a Healthy Building”: ventilation, air quality, thermal health, moisture, dust and pests, safety and security, water quality, noise, and lighting and views. The book is especially topical—as the authors say, “The forced lockdowns and retreat into home isolation have given us a heightened awareness of the role our surroundings play in our health and wellbeing”—and the prescriptions for better ventilation dovetail with pandemicrelated research into the benefits of frequent air changes (through open windows, fans, air filters, etc.). Also especially timely is “The Topography of Wellness,” due out in 2022 from Sara Jensen Carr, Ph.D., an assistant professor at Boston’s Northeastern University. Stemming from her doctoral thesis, the book traces several historical urban epidemics and how the effort to contain or eliminate them has altered the built environment—sometimes inadvertently feeding a future epidemic.

Building WELL

The biophilic design movement has popped up at various times since being touted by ancient Greek medical philosophers in their Platonic academies. A century ago during the modernist movement, access to and views of nature were big, “new” ideas. Then in the 1990s, the U.S. Green Building Council was

founded to develop the LEED rating criteria for healthier buildings. (LEED stands for Leadership in Energy and Environmental Design and is a globally recognized, green building certification program.) I led a team that worked with LEED to develop acoustical criteria that are now the reference standard, but note that this system is primarily focused on building efficiencies, not occupant health. Now the biophilic design movement is reaching beyond LEED and has spawned a newer institution called the International WELL Building Institute. The IWBI publishes a building rating system that goes far beyond green buildings by, as they put it, “using biophilic design in their WELL Standard as a qualitative and quantitative metric.” The goal for all these efforts, from the Greeks onward, is to build environments that improve mental and physical health and stimulate creativity and inspiration. There’s never been a better time.

David M. Sykes leads several professional organizations in acoustical science, including the Quiet Healthcare Council and the Quiet Coalition, both programs operated by Quiet Communities Inc., and the Facility Guidelines Institute Acoustic Advisory Committee, which helped define LEED criteria. For references, see hhf.org/spring2021-references.

Share your story: Tell us your biophilic design ideas at editor@hhf.org.

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research

Spotlight On: Lisa Goodrich, Ph.D.

Hearing Health Foundation’s Hearing Restoration Project (HRP) is the first international research consortium investigating how to regenerate inner ear sensory hair cells in humans to eventually restore hearing. Hair cells detect and turn sound waves into electrical impulses that are sent to the brain for decoding. Once hair cells are damaged or die, hearing is impaired, but in most species, such as birds and fish, hair cells spontaneously regrow and hearing is restored. Following a unique, overarching principle of cross-disciplinary collaboration, nearly instant data sharing, and using multiple animal models, the HRP is working to uncover how to replicate this regeneration process in humans. Lisa Goodrich, Ph.D., became the new scientific director of the HRP in January 2021, having since 2016 served as a member of HHF’s Scientific Advisory Board. A professor of neurobiology at Harvard Medical School whose lab focuses on how neural circuits develop and function, Goodrich received a B.A. in biological sciences from Harvard University and her doctorate in neuroscience from Stanford University. After completing postdoctoral training at the University of California, San Francisco (and Stanford, after the lab moved there), she joined the Harvard Medical School faculty in 2002. In mid-March 2021, Goodrich oversaw the annual HRP meeting, leading discussions of outcomes, plans, and structure. 38

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Early Inspiration

When I was in high school, I was fortunate to spend two years with a special biology teacher who helped us to realize that science isn’t just about memorizing facts. She took us out to collect samples from a nearby lake, challenged our assumptions about how the world works, and encouraged us to design and do our own research in school. She even let me set up an aquarium full of breeding medaka in her classroom so I could study them for my project. I remember cutting lunch short so I could peek in and check on my fish. I was so excited when I saw the first eggs! Because of her, I entered college wanting to be a biology major and never looked back. I have a sister with Down syndrome, so I have always been fascinated by how the brain develops. This was the focus of my graduate research. In my final year of graduate school I went to Seattle to visit my uncle, who introduced me to his friend Ed Rubel. I had lunch with Ed and Jenny Stone, who are past and current HRP members, and learned about the auditory system and hair cell regeneration. It made a big impression. Several years later as a postdoc at UCSF, I reached out to Ed to learn how I might apply my knowledge of neural development to the auditory system. He invited me up to Seattle to learn some anatomy and also introduced me to folks at UCSF who taught me things like how to dissect the cochlea and record auditory brainstem responses. Around the same time, I got to know HRP member Andy Groves and Scientific Advisory Board member Doris Wu through our shared love for development. Having both trained in other fields as well, Andy and Doris echoed Ed’s encouragement and gave me the confidence to make the transition to the auditory system. All of these people have been wonderful sources of information, support, and advice ever since, and now as part of the HRP I feel incredibly fortunate to get to work with the people who played such an important role in bringing me into the field.

In the Lab

Our lab studies how neural circuits acquire their specialized, functional properties, largely in the auditory system. In particular, we are interested in the cellular and molecular mechanisms that create networks of neurons that reliably encode complex sound stimuli, from the initial detection in the cochlea to the first stage of processing in the auditory brainstem. For instance, we showed that there are multiple molecularly distinct subtypes of spiral ganglion neurons and that this diversification depends on signaling from the hair cell. We are also fascinated by the stereotyped pattern of connections seen in auditory circuits—synapses are organized by neuron subtype along the base of the hair cell and are organized according to sound frequency along the dendrites of individual target neurons. Several projects are aimed at figuring out how these connections form and what happens to circuit function when they do not.

Working with my colleagues in the HRP consortium has exposed me to so many new ways of thinking about hair cell regeneration. I learn something every time we get together—the atmosphere is open, collegial, and inspiring. a publication of hearing health foundation

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Although my lab does not study hair cell regeneration, my research benefits from the fantastic tools and resources that the HRP is producing. For example, the gEAR platform created through the HRP makes it possible for anyone to screen hundreds of published datasets, and not just those describing gene expression in the ear. This is one of the wonderful things about the HRP—the impact spreads throughout the field and beyond.

Collaboration

I am most excited by ideas, whether theoretical or practical. I love when I leave a seminar with a new method to try or when I read a paper that suddenly makes me think about our work in a different way. Insights can come from the most random places and without warning, so part of what motivates me every day is knowing that science creates opportunities to do things we never even imagined. Working with my colleagues in the HRP consortium has exposed me to so many new ways of thinking about hair cell regeneration. I learn something every time we get together—the atmosphere is open, collegial, and inspiring. Rather than having to wait for the papers to be published or try to absorb everything in a 10-minute podium talk, we get to discuss the data as it is unfolding, when it is still possible to incorporate cool new ideas and take advantage of unexpected points of synergy. It is such a great way to do—and appreciate—science. In the next few years, I hope we will have a molecular language for explaining the phenomenon of regeneration, both when it succeeds and when it fails. HRP consortium members, along with many others in the field, have been collecting and analyzing data from a wide range of systems where hair cells do or do not regenerate. We will learn a lot just by analyzing these data to find patterns within and across systems. However, our collective experience and intuition as a field will play a huge role in helping us to make sense of what the computers tell us. This is why we want the data and resources to be readily accessible to anyone. It will take many groups working in parallel to find ways to convert supporting cells into hair cells, to hit the perfect balance of proliferation and differentiation, and to functionally integrate these new cells into the cochlea. The good news is we know it is possible because hair cells regenerate naturally in fish and chicks and even in newborn mice. By studying these systems, we can design a blueprint for what needs to happen and then use our rich understanding of the cells and molecules of the mammalian cochlea to make it happen.

Work and Play

These days a typical day for me is pretty simple. I wake up, feed my cats, and then sit in front of the computer typing or talking and often shooing away a cat. I wear many hats, so on any given day I might be recording lectures, grading assignments, talking to someone in my lab about their data, watching a seminar, working on a manuscript, or talking to the folks at Hearing Health Foundation. I love to escape my brain by being active. Sometimes I squeeze in some yoga or a quick run, but the best days end on the tennis court, weather permitting. I’m not any good but that makes it even more fun. It’s like being a kid again, just delighting in occasionally hitting a ball just right. I am also a devoted reader of fiction, with a peculiar preference for very long books such as Donna Tartt’s “The Goldfinch.” It is very Dickensian, which I love. I think every academic should read “Stoner” by John Williams. It is a gem. And short!

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photo credit: amanda janesick, ph.d., in the lab of hrp member stefan heller, ph.d.

Hearing Health Foundation (HHF) improves the lives of people with hearing loss and related conditions by funding research, connecting researchers, publicizing new findings, raising awareness about hearing loss, and promoting hearing health. Complex and interconnected, hearing loss and its variants impact speech processing, brain function, cognition, interpersonal relationships, psychological well-being, and quality of life. HHF’s advances in one aspect or disease-specific area of hearing often benefit many others, creating pathways to better prevention methods, treatments, and cures. » Fundamental studies of inner ear hair cell function

may shed light on these mechanisms: how hearing loss occurs, how balance is disturbed, how tinnitus is generated, how the brain processes sound and speech, and how cognitive decline accelerates. As a consequence, advancing knowledge in one area of research benefits many related areas and promotes novel therapies.

» Breakthroughs in understanding sensorineural

hearing loss also enlighten studies on tinnitus, hyperacusis, and auditory processing disorders because the biological systems that are involved— the inner ear, the brainstem, and parts of the brain such as the auditory cortex—are shared.

» Developing new means to deliver therapeutic drugs

to the inner ear across the blood-labyrinth barrier may lead to discoveries about that barrier that help scientists prevent damage to hearing as a side effect of other drugs (ototoxicity) or of infection.

» Work on the role of neural circuits in the auditory

processing of speech may improve our understanding of hyperacusis, as these same neural circuits play a role in the brain’s sensitivity to sound.

» Discovering how to regenerate inner ear hair cells

to restore hearing may also help medical researchers and clinicians treat tinnitus, which is often caused by these hair cells “mis-signaling” the brain. a publication of hearing health foundation

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Recent Research by Hearing Health Foundation Scientists, Explained A Combination of Genes to Enhance Hair Cell Regeneration in the Adult Mammalian Cochlea Hearing loss is often caused by the loss of auditory hair cells, due to loud acoustic signals or medications that have side effects in the ear. The loss of hair cells reduces the sensitivity of the ear and makes sounds like speech blurry and harder to comprehend. It is also the case that ears with trauma are more susceptible to further lesions because the natural protective mechanisms are impaired. Once lost, hair cells in the mature mammalian cochlea are not naturally replaced, making them perhaps the only type of epithelial cell (epithelium is a layer of cells that lines cavities and covers surfaces in the body) that is not replaced/regenerated. Due to the lack of spontaneous regeneration, the hearing loss caused by hair cell loss is permanent. One way to envision future biological/medical repair of the hair cell-depleted inner ear is to medically induce the generation of new hair cells. Hair cells are surrounded by other cells that are generally called supporting cells. Both originate from a common ancestor cell in the embryonic ear. One idea is to identify molecular pathways that can “reprogram” supporting cells in deaf ears to turn them into new hair cells. This process is called transdifferentiation and implies a change in the identity of one cell type into another, manifested in the shape, molecular composition, and function. Transdifferentiation is a relatively rare biological phenomenon. Among the few examples of naturally occurring transdifferentiation in mammals are the balance organs in the inner ear, where the sensory cells are also hair cells and the transdifferentiation of supporting cells can replenish lost hair cells. The therapeutic strategy guiding our efforts for inducing transdifferentiation in the cochlea is guided by combining knowledge of molecular pathways active during development and during natural transdifferentiation in the balance organs. The huge task is to identify genes or small molecules that can trigger the reprogramming of supporting cells into hair cells. This requires the identification of genes that promote the development of hair cells versus supporting cells. Several labs have performed experiments to express or activate genes that induce generation of hair cells,

For references, see hhf.org/spring2021-references. 42

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in supporting cells. In mature living mammals, induced expression of genes can be accomplished by gene transfer using inactivated viruses or by using drugs that regulate the molecular pathways that control these genes. Research on transdifferentiation has focused on a gene called Atoh1 that is necessary for hair cell formation during development. Earlier work in my lab and elsewhere has shown that the artificial activation of Atoh1 with viruses can induce the appearance of cells that exhibit hair cell features in mature mammalian ears. While the data were promising and exciting, the efficiency was typically too low and the variability too large, indicating that a better approach that yielded a more efficient and reliable regeneration of hair cells is needed. Together with the Groves lab, we tested whether two hair cell genes, Atoh1 and Gfi1, in tandem could enhance regeneration efficiency. We generated viruses that included both genes and injected them into the inner ears of mice deafened by killing their hair cells. This allowed us to evaluate the combination of Atoh1 and Gfi1 in promoting regeneration in the adult deaf cochlea. Our December 2020 paper in Scientific Reports showed that the combination of Atoh1 and Gfi1 produces six times more new cells resembling hair cells than did Atoh1 alone. Although these new cells have many characteristics of hair cells, they do not appear like normal mature hair cells. We now face the task of identifying the means to enhance completion of their differentiation into mature functional hair cells. Combinatorial Atoh1 and Gfi1 treatment is thus a promising strategy to promote hair cell regeneration in the mature mammalian cochlea. —Yehoash Raphael, Ph.D.

Study coauthors and Emerging Research Grants alumni Andy Groves, Ph.D. (far left), and Yehoash Raphael, Ph.D., are members of HHF’s Hearing Restoration Project.


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Brain Inflammation Is a Potential Target to Treat Tinnitus More than 50 million Americans struggle with tinnitus, hearing a sound in the ears in the absence of an external source. A symptom rather than a disease itself, tinnitus in patients ranges from annoying to debilitating and has no cure. Some treatments help some people, but no one treatment seems to work for everyone. A major risk factor for tinnitus is hearing loss. Shaowen Bao, Ph.D., an associate professor of physiology at the University of Arizona College of Medicine–Tucson, and colleagues are closing in on potential treatments for tinnitus by connecting brain inflammation to the condition. They found inflammation in a sound-processing region of the brain triggers evidence of tinnitus in mice that have noise-induced hearing loss, according to a study published in the journal PLOS Biology in June 2019. Coauthors include 2019 Emerging Research Grants scientist Hao Luo, M.D., Ph.D. Recent studies indicate that noise-induced hearing loss causes inflammation—the immune system’s response to injury or infection—in the brain auditory pathway. How it contributes to hearing loss–related conditions, such as tinnitus, however, is not well understood. Bao and colleagues examined neuroinflammation (inflammation in the nervous system) in the auditory cortex of the brain following noise-induced hearing loss, and its role in tinnitus. Their research showed mice with noise-induced hearing loss (under anesthesia) had elevated levels of molecules called proinflammatory cytokines and the activation of non-neuronal cells called microglia, two defining features of neuroinflammatory responses, in the primary auditory cortex in the brain. The research also showed that the cytokine TNFalpha (tumor necrosis factor alpha), a cell signaling protein (cytokine) involved in systemic inflammation, is necessary for noise-induced neuroinflammation, tinnitus, and synaptic imbalance (an altered pattern of signaling between neurons). When the researchers used a pharmacological drug to block the TNF-alpha, the mice no longer showed signs of tinnitus.

The findings suggest that neuroinflammation may be a therapeutic target for treating tinnitus and other hearing loss-related disorders. Bao has been examining the role of TNF-alpha in tinnitus since 2011. “People have found clues for the cause of tinnitus but because many parallel components are involved, we would block one component, then we would have to block another, then another still,” Bao says. “Neuroinflammation seems to be involved in many of these components. We hope blocking neuroinflammation will give us a better chance to block them all, thereby stopping the tinnitus.” The findings suggest that neuroinflammation may be a therapeutic target for treating tinnitus and other hearing loss-related disorders. However, Bao says, “We have more work to do to confirm the mechanism that is causally linked to tinnitus and determine if the results translate to humans. While promising, we still have a long way to go from research to patient care.”

This originally appeared as a University of Arizona press release. A research associate at Wayne State University in Detroit, Hao Luo, M.D., Ph.D., is a 2019 Emerging Research Grants scientist generously funded by the General Grand Chapter Royal Arch Masons International.

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Mass Spectrometry Imaging Reveals Blast Effect on Neurotransmitters in the Chinchilla Model An imbalance in the excitation and inhibition of neurotransmitters is implicated in the pathomechanism (causes) of tinnitus, but more research has been warranted. To investigate, many studies have examined physiological changes due to an acute or chronic exposure to high levels of sound or using salicylate in an animal model. Many other studies target concentration levels of specific molecules using indirect, noninvasive methods in humans and using both invasive and noninvasive methods in animals. These methods have identified the neurochemistry underlying physiological abnormalities induced by tinnitus, and have begun to probe the many molecular mechanisms that occur along the auditory pathway. This is where the use of mass spectrometry imaging (MSI) has been a powerful new approach for tinnitus research. MSI combines the highly specific in vivo detection of neurotransmitters with the visualization made possible by microscopy—allowing for the direct mapping of molecules throughout sections of tissue. This MSI method of global analysis is a promising platform to bridge the gap in many clinical and translational studies. Also of note is that the direct link from an animal model of noise-induced tinnitus to the human pathophysiological response has not been perfect, with many mouse, rat, and guinea pig models having been investigated. The chinchilla model, however, has similarities to human hearing frequencies and how it transmits (conducts) sound from the ear to the brain. For our study in Experimental and Molecular Biology in April 2021, we produced relative quantitative imaging of the excitatory neurotransmitter glutamate and the inhibitory neurotransmitter GABA in the chinchilla central auditory neuraxis, which includes the auditory cortex, cochlear nuclei, and inferior colliculus, the primary centers of the auditory pathway. The ultra-high resolution, quantitative imaging was performed using Fourier transform ion cyclotron resonance mass spectrometry. Our research provides insights about the homeostasis (state of equilibrium) of GABA/glutamate within whole-brain sections of the chinchilla in order to investigate the pathomechanism of blast-induced tinnitus. The data obtained was formed into “intensity map” images showing how much and where the molecule was 44

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By adding this directly measured data, we strengthen the hypothesis that neurotransmitter disruption is linked to the persistence of tinnitus. detected in sections of the brain containing the auditory cortex, cochlear nuclei, and inferior colliculus. After comparing the blast overpressure–exposed subject to a control, we observed that exposure to acute levels of noise disrupted GABA molecule levels. Three days postexposure, we saw a unilateral variance of the inhibitory GABA in the auditory cortex and a global depletion of GABA in the inferior colliculus, while levels of the excitatory glutamate stayed relatively constant. Our results showing the depletion of GABA in the auditory cortex and inferior colliculus in the blast overpressure–exposed chinchilla model is in agreement with evidence of a GABA reduction observed utilizing electrophysiology and noninvasive measures in humans and rats. By adding this directly measured data, we strengthen the hypothesis that neurotransmitter disruption is linked to the persistence of tinnitus. Future studies using these methodologies in the chinchilla model will include more subjects at multiple time points and exposure levels, as well as profile additional molecular changes to help uncover the pathomechanism of tinnitus. —Vijaya Prakash Krishnan Muthaiah, Ph.D.

Vijaya Prakash Krishnan Muthaiah, Ph.D., is an assistant professor in the department of rehabilitation sciences at the University at Buffalo, the State University of New York. He is a 2019 ERG scientist who was generously funded by the General Grand Chapter Royal Arch Masons International.


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Evaluation of a New Method for Measuring Pediatric Hearing Little is known about auditory development during the toddler and preschool years. The primary reason for this gap in knowledge is due to difficulty obtaining reliable behavioral data from young children. Recent work in my laboratory has focused on developing a method for testing this population called the Play Observer–Based, Two Interval (PlayO2I) Method. In our method, a child is trained to perform a playbased task when a signal is heard (e.g., put a block into a bucket). An experimenter—called an observer—watches the child’s behavior to determine when the signal was played. In contrast to clinical testing methods, the signal is randomly placed in one of two intervals for each trial by the computer program. Based on the child’s behavior, the observer determines the interval with the signal. The benefit of this approach is it is time efficient and can guard against some forms of bias. Additionally, because the child is unaware that there are two intervals, it minimizes the cognitive demand for the task. Our December 2020 paper in the American Journal of Audiology examined the interrater reliability of this method for a group of 2- to 4-year-old children who are developing typically. Children were asked to detect a puretone signal in one of two conditions: fixed-level testing, where the signal is presented at the same clearly audible intensity throughout testing; or variable-level testing, where the signal is presented at different levels that are near the child’s anticipated threshold.

All test sessions were video recorded and were then coded by three observers (one real-time, two offline). Comparing data from the three observers from each test session, we answered two research questions: How often do the observers agree on which interval the signal occurred in? Is the resulting summary data for the test session—total percent correct score or threshold—similar for the three observers? Results from this study confirmed strong interrater reliability for the PlayO2I Method. Reliability estimates were affected by the signal intensity level and the type of behavior provided by the child. Resulting summary data was similar across the three observers for both test conditions evaluated. These results indicate that the PlayO2I method is a powerful tool for researchers who are evaluating hearing abilities in young children. —Angela Yarnell Bonino, Ph.D., CCC-A

Angela Yarnell Bonino, Ph.D., CCC-A, is an assistant professor in the department of speech, language, and hearing sciences at the University of Colorado Boulder. She is a 2017 ERG scientist who was generously funded by the General Grand Chapter Royal Arch Masons International.

Based on data from the offline observers, Bonino and team computed the proportion of trials in which each of the eight auditory behaviors were coded for the variable-level condition. The pattern of behavior is shown for individual children, rank ordered by age. For reference, the average pattern of performance is provided in the last column. Trials in which no behavior was observed were excluded.

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Deciphering a Mechanism Behind Bone Conduction Hyperacusis Bone conduction hearing is commonly used for practical purposes: Standard hearing tests measure bone conduction thresholds to assess sensorineural hearing; bone conduction hearing aids help patients with conductive and mixed hearing loss; and bone conduction earphones of various types are increasingly popular. However, the underlying mechanism of bone conduction sound transmission to the inner ear has been elusive and poorly understood because bone conduction sound transmission is complex—multiple frequency-dependent mechanisms may be involved. An understanding of bone conduction has been further hindered due to the inability to measure bone conduction sound transmission directly in the inner ear. Also unclear is how some abnormalities can affect bone conduction hearing. One example is bone conduction hyperacusis (hypersensitive bone conduction hearing)—an unnerving symptom experienced by patients with superior canal dehiscence (SCD), an atypical thinness or incomplete closure of one of the bony canals in the inner ear. However, recent developments now allow the experimental measurement of intracochlear sound pressures during bone conduction in fresh human cadaveric specimens, which can provide detailed information regarding inner-ear sound transmission and estimate hearing function. For our October 2020 study in Scientific Reports, we measured bone conduction–evoked sound pressures in two of the fluid-filled canals of the cochlea, the scala vestibuli and scala tympani. We estimated hearing at the base of the cochlea using the cochlear input pressure drive (the differential pressure across the cochlear partition that separates the canals), before and after creating an SCD.

Consistent with clinical audiograms, an SCD increased the bone conduction–driven cochlear input drive below 1 kHz. However, an SCD affected the individual canal pressures in unexpected ways: The SCD increased the scala vestibuli by 5 to 20 decibels significantly between 250 and 550 hertz, but had little effect on the scala tympani. These findings are inconsistent with the inner-ear compression mechanism that some have used to explain bone conduction hyperacusis. We developed a new computational bone conduction model based on the innerear fluid-inertia mechanism, and the simulated effects of the SCD were similar to the experimental findings. This experimental-modeling study suggests that inner-ear fluid inertia is an important mechanism for bone conduction hearing. It also suggests that the SCD facilitates the flow of sound volume velocity through the cochlear partition at low frequencies, resulting in bone conduction hyperacusis. The intracochlear pressure measurements verified with the modeling analysis provide a new understanding of bone conduction sound transmission and the mechanism underlying SCD-induced bone conduction hyperacusis. —Xiying Guan, Ph.D.

A 2016 ERG scientist funded by Hyperacusis Research Ltd., Xiying Guan, Ph.D., is an instructor in the department of otolaryngology–head and neck surgery, Harvard Medical School, and an investigator at the Eaton-Peabody Laboratories, Massachusetts Eye and Ear.

Magnitude frequency responses of the scala vestibuli (PSV ), scala tympani (PST ), and cochlear input pressure drive (PDIFF ) during bone conduction stimulation in a representative ear. Black lines are the pressures under typical conditions; red lines are the pressures after a superior canal dehiscence (a hole in one of the inner ear’s bony canals) was produced. This generally increased PSV below 1 kHz. Interestingly, the effects on PST were generally smaller. 46

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Hearing Difficulties in Noise Traced to Altered Brain Dynamics Following Cochlear Neural Degeneration When the axons (nerve fibers) of neurons (nerve cells) are damaged or dysfunctional, the sensory information that is relayed from sensory organs, such as the ear, to the brain is reduced and limited—like dead pixels in a computer display. In the auditory nerve, it is type I spiral ganglion neurons (SGNs) that transmit virtually all signals from sensory hair cells in the cochlea to neurons in the auditory brainstem. These type I SGNs are the most vulnerable element in the inner ear, sensitive to environmental effects and aging. Seminal work by M. Charles Liberman, Ph.D., and Sharon Kujawa, Ph.D., a decade ago revealed that acoustic overexposure can damage afferent cochlear neurons even when cochlear hair cells remain intact. Since then, work in over a dozen animal species has demonstrated a marked reduction of type I SGN functionality following exposure to ototoxic drugs or environmental noise. In humans, postmortem analysis of the inner ear shows that approximately 40 percent of SGN axons have already degenerated by age 50, well in advance of comparable losses in other inner ear cell types. Even a small fraction of functional pixels would be sufficient to determine whether a computer was on or off. The difficulty would come in the recognition of a complex image. Eliminating as much as 95 percent of type I SGNs in mice has minimal effect on their ability to hear in quiet backgrounds. The challenge is hearing in noisy environments. In humans, evidence suggests that difficulty hearing in noisy, social settings—a symptom of hidden hearing loss—may reflect premature auditory nerve degeneration. In our study in the journal Neuron in March 2021, Daniel Polley, Ph.D., and I report finding a deterioration in perception in noisy environments after inducing bilateral moderate auditory nerve degeneration in adult mice. We found that the resulting lesions produced surges of noisy, synchronized activity in the auditory cortex that preceded the mice’s failures to detect target sounds in noise. Specifically, cochlear neuropathy produced distinct forms of cortical (brain) plasticity in both excitatory and inhibitory neurons that culminated in net hyperactivity, increased neural gain, and reduced adaptation to background noise. This pattern was not present in the typical-hearing mice, whose cortical responses maintained a typical balance of excitation and inhibition. In the typical-hearing mice, the lack of a target-evoked response predicted behavioral misses; in contrast, in mice after cochlear neuropathy, random

Cochlear neural degeneration (CND) in adult mice disrupts behavioral detection of tones in noise but not in silence.

surges of cortical activity before the tone was presented reliably predicted impending failures to detect sound— revealing a source of internal cortical noise underlying difficulties in the perception of external noise. One encouraging finding is that the negative effects of auditory nerve damage may be overcome by promoting brain plasticity. Intensively training mice as well as humans with or without hearing impairment on sound-innoise discrimination tasks improved their ability to focus on a target sound (one speaker) amid competing sounds (multiple speakers). This raises the exciting possibility that the maladaptive cortical plasticity and perceptual impairments that our study details may be at least partially mitigated by auditory training. —Jennifer Resnik, Ph.D.

A 2017 ERG scientist funded by Hyperacusis Research Ltd., Jennifer Resnik, Ph.D., is a senior lecturer at Ben-Gurion University of the Negev in Israel. 2020 ERG scientist Ross Williamson, Ph.D., supported this study with data collection software, and 1999 ERG scientist Sharon Kujawa, Ph.D., is a member of HHF’s Council of Scientific Trustees.

For references, see hhf.org/spring2021-references. Support our research: hhf.org/donate. a publication of hearing health foundation

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meet the researcher

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Meet the Researcher

Emerging Research Grants (ERG) As one of the leading funding sources available for innovative research, HHF’s ERG program is critical. Without our support, scientists would not have the needed resources for cutting-edge approaches toward understanding, preventing, and treating hearing and balance disorders.

Calvin Wu, Ph.D.

Kresge Hearing Research Institute, University of Michigan

Wu received his doctorate in biology from the University of North Texas and is now a research investigator at the Kresge Hearing Research Institute, University of Michigan, where he completed his postdoctoral work. A 2020 Emerging Research Grants scientist, Wu is the recipient of this year’s Les Paul Foundation Award for Tinnitus Research. noise overexposure is a common risk factor of tinnitus and is thus used as a common tinnitus inducer in animal research. However, noise exposure does not always cause tinnitus, and researchers must rely on behavioral testing to infer an animal’s subjective pathology. However, behavioral tests only work under the assumption that tinnitus is unchanging during the long testing period, which fails to reflect not only the dynamic nature of tinnitus but also its variability. anyone who studies tinnitus in animal models can empathize with the struggle of having to endure the arduous procedure of inducing and inferring tinnitus with lots of waiting in between, sometimes for weeks and months, before one can begin testing any specific hypothesis on tinnitus. It can be frustrating and, if a mistake isn’t caught, misleading. I’ve shared enough pain with colleagues to think there must be a better way. This project is an attempt to find one, by bypassing behavioral testing and directly identifying and locating an objective code for tinnitus using real-time spiking neurons. nobody in my family knows a single scientist, and it still feels weird to call myself one. However, I always enjoyed solving problems, and I was drawn to lab work where there are problems everywhere you look, some technical and some scientific. my late grandfather had age-related hearing loss. I was close with him when I was younger but after his hearing got progressively worse with age, it became more 50

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and more difficult to connect with him. My ex post facto realization of the significance of communication disorders stayed with me and really put my research into perspective. i’m into duathlons (like triathlons for those who are afraid of water). When I was a grad student, running and cycling certainly helped me come up with research ideas. These days, I might listen to a sci-fi audiobook on long runs. If I weren’t a researcher, I would be working on a strategic online multiplayer game revolving around the narrative of alternative history. my secret superpower is that I can do a Fahrenheit to Celsius conversion instinctively with a 5 percent margin of error without resorting to math.

Calvin Wu, Ph.D., received the Les Paul Foundation Award for Tinnitus Research. We thank the Les Paul Foundation for its support of innovative research to increase our understanding of the mechanisms, causes, diagnoses, and treatments of tinnitus.

We need your help funding the exciting work of hearing and balance scientists. Please consider donating today to Hearing Health Foundation to support groundbreaking research. Visit hhf.org/how-to-help.


OUS ROAD TR E N A T N IPS O P S OUNDED SO GO S R E OD NEV Memories are made when you least expect it. That’s why we’re introducing our newest hearing instruments, Unitron Moxi™ Blu. With our most revolutionary technology yet, Moxi Blu delivers next generation automatic optimization for each sound environment, optional on-demand client personalization, seamless integration with the digital world, and the freedom to live in the moment. Because amazing experiences come out of the Blu.

Your adventure begins May 4, 2021 www.unitron.com/us/blu | 800.888.8882

A Sonova Brand © 2021 Unitron. All rights reserved.


Cisco® 8851 Hamilton CapTel 840i ®

Hamilton® CapTel® 2400i

®

Hamilton® CapTel® for Web/iOS/Android™

Life-changing Solutions When it comes to understanding what’s said on the phone, Hamilton® CapTel® makes all the difference for people with hearing loss. Reliable and accurate captions of what’s said ensure clarity on every call – eliminating the frustration even a simple phone call can make. Explore all of the Hamilton CapTel solutions today!

HamiltonCapTel.com/HHM421 030921 FEDERAL LAW PROHIBITS ANYONE BUT REGISTERED USERS WITH HEARING LOSS FROM USING INTERNET PROTOCOL (IP) CAPTIONED TELEPHONES WITH THE CAPTIONS TURNED ON. IP Captioned Telephone Service may use a live operator. The operator generates captions of what the other party to the call says. These captions are then sent to your phone. There is a cost for each minute of captions generated, paid from a federally administered fund. To learn more, visit fcc.gov. Voice and data plans may be required when using Hamilton CapTel on a smartphone or tablet. Hamilton CapTel may be used to make 911 calls, but may not function the same as traditional 911 services. For more information about the benefits and limitations of Hamilton CapTel and Emergency 911 calling, visit HamiltonCapTel.com/911. Courtesy of Cisco Systems, Inc. Unauthorized use not permitted. Third-party trademarks mentioned are the property of their respective owners. Third-party charges may apply: the Hamilton CapTel phone requires telephone service and high-speed Internet access. Wi-Fi capable. Copyright © 2021 Hamilton Relay. Hamilton is a registered trademark of Nedelco, Inc. d/b/a/ Hamilton Telecommunications. CapTel is a registered trademark of Ultratec, Inc.


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