Hearing Health Winter 2019

hearinghealthmag.com

Winter 2019

A Publication of Hearing Health Foundation

hhf.org

The Arts Issue Finding creative inspiration from hearing and balance conditions

Hearing Health Foundation, 363 Seventh Avenue, 10th Floor, New York, NY 10001

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A seamless connection to life - all they have to do is listen.

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Find a Hearing Implant Specialist near you: Call: 800 354 1731 Visit: www.IWantYouToHear.com 1. Apple Inc. Use Made for iPhone hearing aids [Internet]. Apple support.

2017 [cited 24 February 2017]. Available from: https://support.apple. com/en-au/HT201466.

2. Cochlear Limited. D1190805. CP1000 Processor Size Comparison.

2017, Mar; Data on file. ©Cochlear Limited 2017. All rights reserved. Trademarks and registered trademarks are the property of Cochlear Limited. The names of actual companies and products mentioned herein may be the trademarks of their respective owners.

©2017. Apple, the Apple logo, iPhone, iPad and iPod touch are trademarks of Apple Inc., registered in the U.S. and other countries.

The Nucleus Smart App is compatible with iPhone 5 (or later) and iPod 6th generation devices (or later) running iOS 10.0 or later.

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Information accurate as of November, 2017

CAM-MK-PR-335 ISS1 NOV17

letter from the chair

DEAR READERS & SUPPORTERS, it is with great pleasure that we bring you our first issue of 2019, dedicated to the arts—not only the creation of art but also the enjoyment of art of every type. In these pages, you’ll read how having a hearing or balance condition can spark or nurture creativity.

Our cover story writer, Nicolle Cure, shares how, while grappling with a sudden hearing loss and balance issues, she was inspired to create “The Colors of Sound” (page 6), which helped her focus and forget about symptoms that eventually pointed to Ménière’s disease.

Similarly, Priscila Soares found painting to be a solace and an expression of resilience for both herself and her son (page 24), and composer Richard Einhorn was able to capture the divided attention and alternating chaos and silence he experiences into a multimedia show (page 10).

Noise-induced hearing loss is a concern for musicians and music lovers alike, and in an environment where loudness equals fun— whether it’s a concert, restaurant, gym, or even a store or coffee shop—earplugs are a critical line of protection. Hearing Health Foundation (HHF) intern Kayleen Ring tried out several pairs of earplugs in different noisy settings and shares her personal views on them (page 20).

Longtime healthcare professional Bob Kambic is very concerned about the noise level in recreational settings; read a Q&A with Kambic on page 18 and clip and save the accompanying “How Loud Is Too Loud?” chart by the National Institute on Deafness and Other Communication Disorders. While you’re at it, download any of the free smartphone apps that measure decibel levels and use that information to convince restaurant, shop, and gym owners and managers to turn the volume down.

In this issue we also feature literary agent Irene Goodman, who is starting her ninth year of raising funds for HHF through the online auctioning of manuscript critiques. We are so honored and sincerely thank her for her ongoing contributions to fund our researchers, especially those working on Usher syndrome (page 31). We also want to thank our Inner Ear Circle monthly donors and those who remember HHF through planned giving (pages 28–30). And starting on page 32 are results of donor support: 12 pages of research updates and news from our scientists.

For me, the arts and sciences blend together perfectly in the drawings of the brain and its neural networks by Santiago Ramón y Cajal, the founder of modern neuroscience. The Nobel Laureate painstakingly sketched what he saw through the microscope to show us the sheer beauty of the brain’s intricate connections. His drawings were exhibited around the U.S. last year and are collected in a book, “Beautiful Brain.”

Thank you, as always, for your support of HHF and our mission to prevent, research, and cure hearing and balance conditions, and for being a part of our community.

Wishing you the very best for the New Year,

Elizabeth (Betsy) Keithley, Ph.D. Chair, HHF Board of Directors

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HEARING HEALTH The Arts Issue

Artists of all stripes—painters, musicians, cartoonists, composers—find comfort in, and draw creative inspiration from, their experience of hearing and balance conditions.

Publisher Hearing Editor Yishane

Lee

Art Director Robin Senior Editors

Health Foundation Kidder

Amy Gross, Lauren McGrath

Medical Director David

Features 06 Living With Hearing Loss The Colors of Sound. Nicolle Cure 10 Theater Immersive and Interactive. Richard Einhorn 14 Cartooning The Introvert With Something to Say. Lauren McGrath 16 Music Grace Notes.

Sonya Daniel 18 Hearing Health Hyped Up Now, Hurting Later. Bob Kambic 20 Hearing Health 8 Pairs of Earplugs in 4 Noisy Settings.

Kayleen Ring 22 Managing Hearing Loss It Never Hurts to Just Ask. Ruth D. Bernstein

23 Hearing Aids 101 Headphones Plus Hearing Aids: What Works?

Emily L. Martinson, Au.D., Ph.D. 24 Family Voices Giving Imagery to an Invisible Disability.

Lauren McGrath 26 Giving Plan Your Giving for Impact and Meaning. Jared M. Allebest, Esq. Bridging Two Worlds. Vicky Chan 31 Meet the Fundraiser A Literary Agent for Change. Irene Goodman 32 Research On a Data-Driven Mission.

Peter G. Barr-Gillespie, Ph.D. 34 Research Recent Research

by Hearing Health Foundation Scientists, Explained.

46 Arts Roundup Creatively in Common.

Departments

Sponsored

03 Letter From the Chair

48 Advertisement Tech Solutions.

28 Giving Join Our Inner Ear Circle.

49 Marketplace

50 Meet the Researcher David Ehrlich, Ph.D. 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 correctness of information herein.

Cover Nicolle Cure with her painting “After Malachite,” inspired by a mineral known as “the stone of transformation.”

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

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S. Haynes, M.D.

Staff Writers

Barbara Jenkins, Au.D. Emily L. Martinson, Au.D., Ph.D. Kathi Mestayer Advertising

advertising@hhf.org, 212.257.6140 Editorial Committee

Peter G. Barr-Gillespie, Ph.D. Robert A. Dobie, M.D. Judy R. Dubno, Ph.D. Melissa E. Heche, Au.D. Anil K. Lalwani, M.D. Joscelyn R.K. Martin, Au.D. Board of Directors

Elizabeth Keithley, Ph.D., Chair Sophia Boccard Robert Boucai Noel L. Cohen, M.D. Col. John T. Dillard, U.S. Army (Ret.) Judy R. Dubno, Ph.D. Ruth Anne Eatock, Ph.D. Jason Frank Roger M. Harris David S. Haynes, M.D. Anil K. Lalwani, M.D. Michael C. Nolan Paul E. Orlin Robert V. Shannon, Ph.D. 363 Seventh Avenue, 10th Floor New York, NY 10001-3904 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: 0888-2517) is published four times annually by Hearing Health Foundation. Copyright 2019, 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.

photo credit: lia selfridge

Winter 2019, Volume 35, Number 1

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living with hearing loss

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“ THE

COLORS OF SOUND

By Nicolle Cure

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My art is the fuel that ignites my passion for helping others. I use art as a tool to create so I can support the causes I believe in. Over the course of my artistic career, I have created several painting collections, for the most part drawn from life experiences. And as with any artist, my background influences my work, along with the mix of cultures I have absorbed.

I am fortunate to have been able to collaborate on worthy initiatives, such as animal welfare campaigns and programs promoting education and health research. Now I am proudly raising awareness about a cause that is dearest to my heart: bringing attention to the ‘invisible disabilities’ of hearing and balance disorders.

This comes as a result of experiencing—and learning to live with—these conditions myself.

”

photo credit: lia selfridge

living with hearing loss

i was born and raised in the seaside city of Barranquilla, Colombia. At age 17, I moved to the U.S. I majored in computer animation and advertising in college in Florida, and studied art with Sotheby’s Institute of Art. August 4, 2017, was a Friday. I woke up and noticed that the right side of my head was numb. I felt a strong pressure in my right ear and couldn’t hear anything as my ear felt blocked and full. It was really scary, considering that I had no prior experience with these symptoms— and very sudden. I immediately went to the emergency room where the doctors started me on a course of oral steroids.

My first audiology appointment three days later showed a profound hearing loss in my right ear, and I was given two steroid shots injected into my right middle ear. Fortunately, after continuing this treatment of steroid shots for two months, I was able to recover the ability to hear low frequencies. However, the high frequencies only improved one degree to severe (up from profound). This led to tinnitus and extreme sensitivity to loud environmental sounds (hyperacusis).

The hearing loss was only the beginning. I also suffered from debilitating dizziness episodes, diagnosed as benign paroxysmal positional vertigo. My balance was completely off and I swayed to the right when walking. I had to hold onto furniture while trying to walk in my own home. It felt like I was walking on quicksand.

I also experienced constant migraines, nausea, and fatigue, to the point that I could not get out of bed on certain days. My body felt heavy as if I had a slab of concrete on top of me, and like I was dehydrated. My brain felt perpetually foggy.

Filling in the Blanks

For several months, I felt completely isolated from the world. Even though outwardly I may have seemed fine, I couldn’t function as I used to. I didn’t want to see anyone, and I avoided phone calls and of course going out.

I’ve always been a very independent person, and the fact that I couldn’t do anything or go anywhere made me feel helpless and hopeless. Especially vexing was that I could not do the one thing that gave me joy—painting, my passion. I was extremely depressed as well as anxious, with mood swings.

My boyfriend, Felipe, is a music producer and sound engineer, and throughout he has helped me thrive and heal with his patience and love, for which I am truly grateful. He drove me to countless appointments when I could barely stand up because of the vertigo.

One day, using his recording equipment, Felipe showed me the range of frequencies that I was no longer able to hear anymore. It was a bizarre experience to be able to see on a screen the sound waves and frequencies that I could not hear.

When I looked at the frequencies, I saw patterns. My natural reaction as an artist was to “fill in the blanks” of what was now missing. Seeing

the sound allowed me to capture emotions and moods.

I decided I had to make an effort to go back to my studio in order to create and communicate. This is how the painting collection, “The Colors of Sound,” was born. I used acrylic inks and paint to mimic the energy and movement of the sound waves. I chose vibrant colors to create an uplifting, positive message, or darker colors for a more somber tone. With the paintings I wanted to explore the relationship between sound and life, to consider how we make sense of our surroundings through what we can hear.

Vestibular (balance) disorders are not easily understood because even though those who have them may look fine on the outside, we are actually dealing with terrible symptoms that are extremely debilitating, not only physically but also, and even more so, mentally.

My own family has had a hard time understanding my symptoms.

I realized that through “The Colors of Sound” painting collection I could help educate others. Helping those new to this world of hearing and balance disorders, whether directly or in a loved one, has been incredibly therapeutic and meaningful for me.

It was a bizarre experience to be able to see on a screen the sound waves and frequencies that I could not hear. When I looked at the frequencies, I saw patterns.

My natural reaction as an artist was to “fill in the blanks” of what was now missing.

Seeing the sound allowed me to capture emotions and moods. a publication of hearing health foundation

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And of course art has been my most powerful coping mechanism. In fact when I am in the process of creating, I can focus and forget about my symptoms. Art has kept me sane and optimistic during these periods of frustration and sadness. It has always been an inherent part of my being, and so it is now, more than ever. Now my passion is not only to create but also to use those creations to help those around me.

Process of Elimination

Nicolle Cure with her boyfriend Felipe, a sound engineer, who provided the impetus for seeing the colors of sound, resulting in “Iris” (above) and “The Eighth Month” (below), a reference to when her symptoms began, in August.

My condition was challenging to identify because of the variety of symptoms I described. For instance, it is unusual for patients who experience sudden hearing loss to also feel numbness in half of their head. An MRI ruled out acoustic neuromas or other abnormalities. The numbness persisted for about six weeks, which was hard to explain.

Some doctors attributed this to a severe inflammation of the auditory nerve.

Since that day in August 2017, I had so many appointments with a phalanx of neurologists, neurootologists, audiologists, chiropractors, holistic medicine providers, and massage therapists, to find a diagnosis and relief. My hearing and balance as well as vision and immune system were all tested. I would often get mixed opinions, which made it very confusing.

Some of the symptoms affected other symptoms. I felt like I had a low-grade flu for over a year, feeling congested, light-headed, and foggy. Finally a doctor diagnosed me with sinusitis and prescribed allergy medicine that has helped reduce pressure in my ears. Since then, my chronic fatigue has decreased significantly!

After more than a year, both my audiologist and neurootologist came to a diagnosis of Ménière’s disease due to my earlier diagnosis of secondary bilateral hydrops (caused by problems in the volume or concentration of inner ear fluid). As is the case with many patients suffering from Ménière’s, my diagnosis was made after other potential conditions were eliminated and following

Art has kept me sane and optimistic during these periods of frustration and sadness. It has always been an inherent part of my being, and so it is now, more than ever. Now my passion is not only to create but also to use those creations to help those around me.

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living with hearing loss

A Special Connection

HHF—an organization working to treat and cure the condition that is difficult to diagnose and has no specific cause—fit with my ambition to make HHF’s mission known.

I’m grateful to those who generously gave to my fundraiser, especially the friends and family I messaged constantly during the two-week giving period. The contributions exceeded my goal and will do so much for my dream of a happier, healthier life for all who live with Ménière’s disease. —N.C.

Since I discovered Hearing Health Foundation’s powerful hearing and balance research, I’ve received so much encouragement about my health.

HHF’s promising scientific work and my interactions with its committed team have made me feel truly understood, cared for, and eager to help.

This special connection made HHF an easy choice when Facebook suggested I create a fundraiser for my birthday in September—for the charity of my choice. I knew that a fundraiser for HHF would make more people aware of Ménière’s disease, the chronic hearing and balance Create your own Facebook fundraiser for HHF at condition with which I’d just been diagnosed. At facebook.com/pg/HearingHealthFoundation/ the time, I had been eagerly using social media fundraisers. platforms to share information and inspire hope about Ménière’s. Fundraising on Facebook for

a yearlong documentation of the combination of symptoms that are characteristic of this hearing and balance disorder. The dizziness, nausea, fluctuating hearing, tinnitus, and sensitivity to sound are all characteristic of Ménière’s, whose cause isn’t fully understood.

photo credit: lia selfridge

Managing, and Learning

I find that environmental factors, including how much sleep I get, can affect the symptoms’ intensity, so I am trying to stay healthy overall. I treat the migraines with medication to regulate the fluid pressure in my ears. Vestibular Rehab Therapies, an exercise-based balance program, has helped me regain my balance, as I had difficulty walking or even just standing still.

A hearing aid in my right ear that uses masking sound therapy has helped diminish my tinnitus and hyperacusis. I also use customized, musician’s in-ear protectors to try to enjoy the music and concerts Felipe and I both love, although we enjoy these far less frequently than I could manage before.

After a year and a half of coping with the sudden hearing loss and ensuing

hearing and balance symptoms, and the prolonged process of even reaching this diagnosis, I can give some advice: Seek medical help immediately if you feel something is wrong with your body. Go to your closest emergency room or urgent care facility.

The trip to the ER on the very first day saved my hearing. If I had not started on corticosteroids immediately after my symptoms first appeared, my progress would have not been the same. From what I’ve learned, a steroid treatment must start within the first 72 hours of a sudden hearing loss.

Getting a prescription for anxiety or drops for an ear infection will not help when it comes to sudden hearing loss.

I also recommend using social media like Facebook groups to find a community experiencing similar health conditions. I remain in touch with many of the people I have met on this hearing loss journey, and we continue to constantly check on one another. I appreciate having a space to openly share my conditions, finding relief by knowing I am not alone.

I want others who are struggling with symptoms, especially without a diagnosis or cause, to know there is hope, and friendship.

My life-changing experience has given me an amazing opportunity to create awareness about invisible conditions like mine. It has given me a sense of purpose, and I truly feel the need, every morning, to create something beautiful to deliver a powerful message of positivity. For all of us affected by hearing and balance disorders, I hope to continue a meaningful journey of healing through art and awareness.

Nicolle Cure lives in Miami. Her art has been widely displayed in Florida including Art Basel Miami and West Elm stores, as well as in China, South Korea, and Colombia.

For more, see nicollecure.com and menieresdisease.org.

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

Support our research: hhf.org/donate

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Immersive and Interactive Working with a filmmaker, a composer re-creates the disjointed, chaotic, and alternatingly silent and noisy experience of having a hearing loss.

By Richard Einhorn

young kids ran about the new open theater space at the Brooklyn Academy of Music, laughing and playing under the multiple movie screens and enormous loudspeakers. Older kids and hipsters lay on the floor, aiming laser pointers at large targets in the theater’s corners. Other people turned dizzily about, gawking at evocative film images that unspooled on the screens as music and sound effects swirled around them.

This was “The Shooting Gallery,” described by one reviewer as a “truly interactive, multimedia immersive ‘theater’ of the future.” I composed the music for the piece and indeed, it was a joyful, wonderfully crazy event.

But no one who was there realized that “The Shooting Gallery” was inspired in great part by one of the worst days of my life, the day I permanently lost nearly all my hearing.

Richard Einhorn’s show, created with filmmaker Bill Morrison, allows audience members to use laser pointers to affect what is displayed and heard.

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About two years earlier, I had rented a motel room in western Massachusetts to get away from my hectic schedule and just compose music. The night I arrived, I felt dizzy and tired at dinner, and my ears were clogged. I decided to turn in early and start writing music the next day.

I woke with a violent start five hours later. Both ears were ringing with extremely loud tinnitus and I realized that I couldn’t hear anything at all in my right ear. I was also so incredibly dizzy that I couldn’t even stand or walk.

Panicked, I somehow got to the local emergency room where they told me I had experienced a sudden hearing loss (no kidding). The doctors prescribed the steroid prednisone and assured me my hearing would likely come back in two weeks or so. And sure enough, two weeks later, I did start to hear sounds again in my right ear, but they were so loud and horribly distorted that I couldn’t understand a thing.

To make matters worse, I already had major hearing problems in my other ear from otosclerosis (an overgrowth of bone in the middle ear). The combination—a left ear that was down 60 percent from what is typical and a now totally dysfunctional right ear—had left me functionally deaf.

theater

The next few months were spent trying to cope, both physically and psychologically, with this new reality.

I quickly figured out that with good headphones and enough amplification, I could continue to compose.

To deal with the chaotic sounds my right ear produced whenever I encountered loud sounds, I wore an earplug in my right ear whenever I walked around noisy New York City. A high-tech hearing aid for my left ear, augmented by hearing and microphone apps on my smartphone, enabled me to follow conversations again.

One day, I met my friend Bill Morrison for lunch at a tiny Middle Eastern eatery in Manhattan’s Hell’s Kitchen. Bill is one of the finest, most original filmmakers I’ve met. He transforms rare archival footage and films that are damaged by age or poor storage into haunting, indescribably beautiful cinematic poems.

As we ate our falafel, I told Bill what it is like to navigate the world with hearing that is so radically changed. I described how disorienting it is to walk around the city with my hearing aid off and hear virtually nothing. I told him that even when I do hear sounds, I have absolutely no idea where one might be coming from because I only have one usable ear. And I detailed how distorted the sound in my right ear is, like a screaming robot from a bad science-fiction movie.

Bill was both deeply sympathetic and fascinated.

He said it reminded him of what it was like to walk around the midway at a carnival, with its barkers, sideshows, and games: an overwhelming experience, vertiginous, and strange.

Bill said, “Maybe there’s a theater piece here, something we could do together based on a carnival. We could take that sense of overwhelming disorientation you feel and make some kind of interactive event out of it. Something like a shooting gallery but with films and music.”

We immediately started to brainstorm. The piece would take place in an open theater space with no seats so people could wander around. We’d give the audience laser pointers which they’d aim at big targets that would pop up on large screens during the show. Based on which targets they hit, a bunch of computers packed with video clips and

I described to my friend what it was like to navigate the world with hearing that was so radically changed, how disorienting it is to walk around the city with my hearing aid off and hear virtually nothing. Even when I do hear sounds, I have absolutely no idea where one might be coming from because I only have one usable ear. And the distorted sound in my right ear can be like a screaming robot from a bad sciencefiction movie. His response, in sympathy and fascination?

Maybe there’s a theater piece here.

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short pieces of music would create, on the fly, four simultaneous films and multipart music that swirled around the space. The audience, by hitting the targets, would control the order of the events in real time.

And every time you saw the piece, it would be a completely different, non-reproducible experience.

Soon after that lunch, Bill called to say that the Brooklyn Academy of Music wanted us to do “The Shooting Gallery” as part of the opening season of their new, state-of-the-art “black box” theater.

We added two brilliant collaborators to our team: theater artist Jim Findlay and sound designer/computer programmer Ryan Holsopple.

Bill compiled or shot about 1,500 short video clips, and I wrote several thousand tiny pieces of music that could be connected together or played simultaneously. Jim and Ryan created the targets, the four-screen projection for the films (a screen for each of the four walls), and the surround sound system. The piece required six mammoth computers and elaborate custom algorithms to detect the target hits and immediately create films and music.

“The Shooting Gallery” went live in early November 2012, right after Hurricane Sandy hit New York City and paralyzed the region.

Despite having to replace all the computers that the storm damaged, every show was technically flawless. It truly looked and sounded like a carnival reimagined as performance art.

At each show, I watched the audience, deeply moved. The overnight loss of nearly all my hearing had been devastating. But the nights that “The Shooting Gallery” played, that wrenching personal experience was transformed into delighted smiles and happy chaos.

Richard Einhorn is a New York City–based composer, record producer, and engineer who, after experiencing a sudden hearing loss in 2010, has used his background in professional audio to become an advocate and consultant for better hearing technology. He is the vice chair on the Hearing Loss Association of America’s Board of Trustees.

Watch a trailer of “The Shooting Gallery” at vimeo.com/57257497.

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

Support our research: hhf.org/donate

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Algorithms Creating Art The algorithms counted target hits from the lasers that audience members pointed at the four screens, and based on the number and density within a time frame, they selected from a group of film clips and musical phrases that could either be played sequentially or layered, or both. As the piece progressed, a set combination of film clips and music was gradually replaced with newer material so there was a sense of cohesion for each section and also a sense of movement.

We controlled the contents of each section but not the details of how they were put together or the speed of the evolution between sections.

Hopefully future performances will be more sophisticated and feature more complex and fluid algorithms and more elaborate games for the audience to play. —R.E.

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THE INTROVERT WITH SOMETHING TO SAY

By Lauren McGrath

maureen “marzi” wilson is an author, illustrator, and self-described introvert. As one who goes about life with the tendency to speak less and listen more, she fittingly calls her collection of drawings, “Introvert Doodles.”

Wilson does not have a hearing loss. “As someone with typical hearing, I believe that I and others like me have a lot to learn from those with hearing loss. We need to pay attention to their experiences,” she says.

“I’m Deaf/Hard of Hearing” is part of Wilson’s “I Want You to Know” series, a straightforward way to educate readers about hearing loss and other conditions that can be misunderstood or stigmatized. As an introvert, Wilson knows that even the most well-meaning people have misconceptions about what does not affect them firsthand.

Since Wilson does not fully know what it is like to have a hearing loss, her work represents the feelings and experiences of real people with whom she’s connected online. In fact for all of her “I Want You to Know” drawings, Wilson engages with individuals who are personally affected. They describe the biases that interfere with their lives and offer practical solutions to help overcome

“I’m Deaf/Hard of Hearing” is part of Wilson’s “I Want You to Know” series, a straightforward way to educate readers about hearing loss and other conditions that can be misunderstood or stigmatized. As an introvert, Wilson knows that even the most well-meaning people have misconceptions about what does not affect them firsthand. challenges. “This provides an opportunity for them to voice their experiences—I just illustrate them,” she says.

In addition to spotlighting hearing loss in “I Want You to Know,” Wilson has previously created doodles on autism, grief, and obsessive-compulsive disorder, and in the future she plans illustrations about chronic illness, dyslexia, and miscarriage.

Wilson has long recognized that being introverted can be a creative advantage. “The things I like best about myself—being perceptive, creative, and thoughtful—go hand in hand with my introvert tendencies,” she says. In fact these are the very characteristics needed to capture all aspects of the human experience, with compassion.

Maureen “Marzi” Wilson lives in Idaho. For more, follow her on social media @introvertdoodles and see introvertdoodles.com. Lauren McGrath is HHF’s marketing manager.

Share your story: What is something you wish others knew about your hearing loss? Tell us at editor@hhf.org.

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music

h e ar i n g h e alth foundation

Grace Notes Unbowed by a progressive hearing loss, a musician, vocalist, and mom continues to nurture a love for performing (among her boys, too).

By Sonya Daniel when i was a kid in elementary school i passed every hearing test that the mothers in the PTA administered. I was a pretty clever little girl. I learned that every test has a visible “tell” and knew how to guess correctly on all of them. I never wanted to fail any test.

I learned to read lips, and assumed everyone else also heard the annoying ringing that I heard constantly.

It wasn’t until 2008, at age 31, that I learned that I likely was born with a severe bilateral sensorineural hearing loss. I hadn’t heard the term before, but I was told this helped explain the tinnitus, the perception of sound when no actual sound source is present.

For me, it’s constant. It used to be just a tiny ring that I could tune out. Now I can hear it over almost anything. Sleeping is hard.

Sitting in the quiet to try to meditate or collect my thoughts is increasingly difficult.

When I went to the audiologist 10 years ago, I hadn’t had my ears tested since I was little. I didn’t know what to expect. The diagnosis of a severe hearing loss was much worse than I had ever imagined it would be because it is also progressive. I left the office knowing at some point—no one can tell me exactly when—I’ll be completely deaf.

As the mother to three young boys, I wondered how much longer I’d be able to hear them say “I love you,” or if my ears would hold out long enough to hear their grown-up voices. No one told me when my hearing started to get worse how exhausting it was going to be to struggle to hear people and the world around me all day, every day.

They couldn’t tell me that removing my hearing aids at night would be such a relief because at that point I can stop struggling for the day.

I wonder, how much longer until I can’t hear music? Music is not only my passion, it’s my chosen profession. I never wanted to be anything but a musician in some capacity. My dad played the guitar.

My mother says when I was little I liked to sit in front of him and touch his guitar. I stood in front of the stereo and touched the speakers. In retrospect, I suppose I was trying to “hear” the music.

From a very young age I loved to sing, and am fortunate that my tiny body held this very big voice. That gift and love went with me into high school. I played the clarinet and percussion and sang in the choir.

I won several talent competitions, and my love for performance grew.

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My mother says when I was little I liked to sit in front of my dad and touch the guitar as he played it. I also stood in front of the stereo and touched the speakers. In retrospect, I suppose I was trying to “hear” the music.

music

I knew I’d go to college and major in music as a vocalist. I knew I wanted to share my love for music and teach others. But college was a very difficult and stressful time. There was a course called “Sight Singing and Ear Training” required to complete my bachelor’s in music. With my undiagnosed hearing loss, I struggled. Professors kept trying to teach me but with my hearing compromised, none of us realized how big a challenge it would be.

I did get to teach music to every level, in my home studio as well as with a music school. But eventually, I wasn’t able to hear my vocal students well enough to give them what they needed to succeed. My piano students were easier because I could see the keys. Still, I can’t hear the highest frequencies, and now I’m losing the lower pitches as well.

I want young musicians to be given the very best tools to grow and learn, and enjoy a lifetime of giving that gift back to the world. A music teacher who is not able to hear well enough to instruct and correct her students is doing her students a disservice. So that chapter of my life finished.

My love for music and performance is still as strong as it’s ever been. I have hearing aids with a setting that lets me still be able to enjoy music. It’s not perfect, but it’s something.

My hearing loss journey has brought me to the cochlear implant. I’m a candidate in the preliminary stages of that process. Although my ears meet the criteria to qualify for the implant, my insurance hasn’t agreed to cover the cost for now. My hearing has to decline a bit more to be covered, and the out-of-pocket cost financially outweighs the benefit for now. Fortunately, my hearing aids are also technologically advanced and I have been doing well with them, and the masking program they have diminishes my tinnitus.

Living with tinnitus and hearing loss can be overwhelming and difficult, but I’m not as afraid of living this way as I used to be. Everyone has a thing.

This is just mine. I like to say I don’t live with hearing loss—it lives with me. My life isn’t defined or consumed by my ears, although it’s felt that way at times. I’m constantly learning and growing. I lead a full and busy life.

I’m a voiceover artist and use my studio to record voices for audiobooks, commercials, and corporate videos. It’s unique, fun, and fulfilling work. My speech hasn’t been affected much yet, so my hearing loss hasn’t been a factor.

Voiceover acting is my side hustle. Being a mom is my full-time hustle. All of my boys (now ages 20, 16, and 14) are percussionists—we like to jam together, with me on the banjo or guitar. But I can tell you with three drummers in the house, having a hearing loss isn’t necessarily a negative all the time!

Sonya Daniel lives with her family in Arkansas.

From the top: Sonya Daniel performing in her hometown at age 13; jamming on the banjo and ukulele with her oldest son; and with all three sons.

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

Support our research: hhf.org/donate

a publication of hearing health foundation

winter 2019

17

hearing health

h earing health foundation

HYPED UP NOW, HURTING LATER In an interview, longtime healthcare professional Bob Kambic warns about the health risks of the over-amplification that is becoming increasingly common at recreational events.

What got you interested in the topic of the dangers of loud entertainment?

I am 75 and a grandfather. Recently I was in Detroit for an event in which my grandchildren participated. The finale was held in Ford Stadium, a football venue. The electronically amplified sound was deafening even wearing my noise-canceling headphones.

The 30,000 or so people in the stadium were subject to what in other places would be called torture. I wondered, is there a way to tell the organizers they are harming our young citizens, the future of our country?

As a retired healthcare professional, I have a half century of experience in the healthcare field and more than 50 publications in peer-reviewed journals. This got me thinking about noise levels in entertainment venues. Raising awareness of this public health problem needs to be done.

Why is the music so loud?

Consider a musician playing an electric guitar in front of a crowd. She will hear her music from an amplifier. But she then finds that she likes it loud and turns the small knob up. After weeks or months that level is not satisfactory and she makes another turn up.

Over time, as the louder sounds gradually diminish hearing, it becomes necessary to turn the knob up more and more. For music professionals, this is called increasing the gain, which is one way to increase the volume of sound from the speakers. The other way to increase volume is to turn up the signal coming out of the speakers themselves.

When musicians play to big crowds they now have amplifiers and systems that produce thousands of watts of power and can project over 100 decibels (dB). This technology is also used for recorded music. It “entertains” but it also may harm the listeners’ ears. Musicians and their producers know that “loudness does not equal quality”—but that caution can get lost in the need to entertain.

By 2022, live music industry revenue is projected to be worth $31 billion worldwide, according to PricewaterhouseCoopers. Like other industries, the money is the driver. To me this means the

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hearing health

By 2022, live music industry revenue is projected to be worth $31 billion worldwide, according to PricewaterhouseCoopers. Like other industries, the money is the driver. To me this means the live music industry will continue to use larger and louder electronic amplification. live music industry will continue to use larger and louder electronic amplification.

The electronically amplified sound is now also ubiquitous at rallies and sporting events, both professional and collegiate—or even younger—to hype up the crowd.

chart credit: national institute on deafness and other communication disorders

What can we do to protect our hearing, and especially the hearing of children?

Earplugs. I was happy to see an article in a music industry publication saying that the purchase of custom musician’s earplugs is one of the best investments a music industry worker can make. They didn’t recommend earphones, mixers, digital equipment, or music instruments—just earplugs. Frequent concert-goers should also invest in custom musician’s earplugs.

For children, this is a tough question because kids don’t want to be told what to listen to and how loud the sound should be. But there are a variety of products for hearing protection. The first are simple foam earplugs, widely available at hardware stores, pharmacies, and online. The disadvantage is that they must be pushed into the ear canal and may not fit all size ears. (See “8 Pairs of Earplugs in 4 Noisy Settings,” next page.)

The next step up is over-the-ear earmuffs that cover the ear entirely. They are long-lasting and work well but they are also big and bulky.

Finally there are noise-canceling headphones made by audio or electronic equipment manufacturers. I use battery-powered noise-canceling headphones on airplanes and trains, and was wearing them at the event at the Ford Stadium. You may want to explore the varying prices and technology. Many can also play personal music through wireless and/or wired connections.

Besides using hearing protection, what else can we do?

amplification at indoor and outdoor events. Decibel meters are inexpensive or free as smartphone apps and can be used to show managers and administrators the sound level at events, and when the volume reaches dangerous levels at over 85 dB. The music and electronic sound industry is in control of this problem because of the amount of money in the industry, but also because well-known musicians such as Huey Lewis and Eric Clapton, who are open about their hearing loss, are helping to raise awareness. Media coverage and local action can bring attention to bear, and over time the industry may become aware of amplification as a health problem for everyone, including the audience, not just for those in the industry.

Bob (Robert T.) Kambic, MSH, is a retired health professional who worked at the U.S. Department of Health and Human Services and the Johns Hopkins University (JHU) Bloomberg School of Public Health. A current visiting scientist with the JHU Medical School Division of Health Sciences Informatics, he plays and sings American traditional music using acoustic instruments.

For references, see hhf.org/winter2019-references.

Share your story: Have you experienced tinnitus and/or hearing loss after a concert? Tell us at editor@hhf.org.

Support our research: hhf.org/donate

Take action against unnecessary noise. Groups of parents can petition their schools and sports teams to reduce

a publication of hearing health foundation

winter 2019

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8 4

PAIRS OF EARPLUGS IN NOISY SETTINGS By Kayleen Ring

before my 2018 summer internship at Hearing Health Foundation (HHF) in New York City, I underestimated the importance of protecting my ears, often leaving myself at risk for damage from noise at concerts, sporting events, and other loud places.

I took my typical hearing for granted until learning that hearing loss is largely caused by noise exposure and can negatively impact the brain function of young adults, even in its mildest forms. But I was also encouraged to learn that noise-induced hearing loss (NIHL) is preventable. Earplugs in particular are a convenient, low-cost tool for hearing preservation.

To improve my own hearing health and to create awareness about NIHL, I experimented with different

Concerts Just one loud concert (volume up to 120 dB) can cause permanent damage to your ears. I tested earplugs at two musical events. setting

1. Eargasm High Fidelity Earplugs NRR: 16 dB Effectiveness: 10 Comfort: 10 Ease of Use: 10 At first, I worried wearing earplugs at a performance by one of my favorite artists would negatively affect my concert experience, but this pair allowed me to hear and enjoy the music perfectly at a reduced volume.

They were so comfortable I forgot they were in my ears! They were easy to remove using the pull tab, and I also liked the carrying case they come in because it fits in my small bag and keeps the earplugs hygienic for reuse.

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types of earplugs in various loud settings.

Expecting no more than a handful of foam options, I was excited to learn what an assortment of earplugs is available—each with different shapes, sizes, and features. Previously, my earplug experience had been limited to basic foam pairs to drown out my college roommates’ snoring!

I evaluated each personal earplug use experience with a 1 to 10 rating—10 being highest—for effectiveness, comfort, and ease of use. The Noise Reduction Rating (NRR) metric indicates how much noise is blocked out by the pair of earplugs. Please keep in mind this is one person’s nonscientific, personal experience of a selection of earplugs.

2. Moldex Pocket Pak Squeeze NRR: 27 dB Effectiveness: 8 Comfort: 9 Ease of Use: 9

3. Mack’s Blackout Foam Earplugs NRR: 32 dB Effectiveness: 9 Comfort: 10 Ease of Use: 9

The triple-flange design, neck cord, and carrying case provided a secure earplug experience at an even louder concert where sound levels spiked to 120 dB. Unprotected exposure to noise at this level, which is equivalent to that of an ambulance siren, can damage hearing in seconds. Fortunately, the ridged edges on the earplugs I used made inserting them far easier and faster than foam earplugs that need to be shaped prior to use.

These were excellent because I was able to hear both the music and the trainers’ instructions, but at a lower, safer volume. Less distracted by the loud music than usual, I was able to focus more carefully on my workout and form. They fit snugly and stayed in place over the course of the 60-minute, high-intensity session.

Group Fitness At a popular group fitness class, I recorded sound decibel levels, and the results showed extremely loud and dangerous levels of noise. The average was 91 dB and the max 119 dB over the one-hour class period.

For a healthier workout, I wore earplugs. setting

4. EarPeace “HD” High Fidelity Earplugs NRR: 19 dB Effectiveness: 10 Comfort: 10 Ease of Use: 8 I was particularly impressed that this pair included three sets of filters offering different levels of protection. I used the highest decibel filter, 19 dB, and found the class music was still clear and enjoyable. My only challenge was properly inserting the very small filters.

hearing health

I was excited to learn what an assortment of earplugs is available—each with different shapes, sizes, and features. Previously, my earplug experience had been limited to basic foam pairs to drown out my college roommates’ snoring!

Restaurants When I wasn’t interning at HHF this summer, I worked at a popular restaurant on Long Island, New York, that was always filled with chatty customers waiting roughly three hours for service. The busy restaurant also had live musical performances that amplified an already loud, crowded environment. This is dangerous for workers and patrons alike. Here, the earplugs I wore still allowed me to hear clearly and hold a conversation.

setting

5. Etymotic ER20XS High-Fidelity Earplugs NRR: 13 dB Effectiveness: 8 Comfort: 8 Ease of Use: 9 The Etymotic earplugs had the positive qualities of the typical high-fidelity earplugs and included three interchangeable eartips, a hygienic carrying case, and a neck cord, providing a secure and effective earplug experience.

6. EarPeace “S” High Fidelity Earplugs NRR: 19 dB Overall Effectiveness: 10 Comfort: 10 Ease of Use: 10

This pair was great. They reduced the noise perfectly so it was at a comfortable yet still audible volume.

The dual-flange design and soft silicone material made the earplugs fit well, comfortable, and easy to use. setting New York City Subway

Decibel levels on subway platforms trains are extremely high and can cause hearing damage, especially for frequent riders and employees. For my tests, I sat inside the 34th Street–Penn Station 1/2/3 subway station across the street from the HHF office, where I heard screeching trains, talkative tourists, and a steel drum player.

7. Moldex Sparkplugs NRR: 33 dB Overall Effectiveness: 9 Comfort: 10 Ease of Use: 9 The Sparkplugs blocked out noise while allowing me to hear conversations and train announcements. They were easy to mold into my ears, allowing for optimal noise reduction. The pattern on the earplugs is colorful and fun, making them appealing for children and easily locatable in your bag.

Share your story: Which earplugs do you like? Tell us at editor@hhf.org.

8. Alpine Plug & Go NRR: 30 dB Overall Effectiveness: 8 Comfort: 8 Ease of Use: 8 These foam earplugs reduced volume but the noise was muffled.

Consequently, these would be a great option for more sedentary activities, like sleeping or flying, where you are aiming to block out all noise.

The foam was comfortable and fit snugly in my ears, but was challenging to mold.

The reviews and ratings here are based on my individual experiences and are not intended to encourage or discourage anyone’s use of specific earplugs. High ratings are not product endorsements. As someone newly informed about the dangers of noise, it is my hope this unscientific earplugs review for HHF will raise awareness and inspire others to investigate hearing protection that best meets their needs.

2018 HHF marketing and communications intern Kayleen Ring studies marketing in the honors program at Providence College in Rhode Island.

Support our research: hhf.org/donate

a publication of hearing health foundation

winter 2019

21

managing hearing loss

hearing health foundati o n

IT NEVER HURTS TO JUST

Ask

One of the challenges of having a hearing loss is you can’t always anticipate the situations where you may need help in advance.

By Ruth D. Bernstein

a friend and i met at new york city’s Metropolitan Museum of Art, where I volunteer alternate Wednesdays, distributing and collecting equipment at their hearing accessible gallery tours.

At that time we were seeing the stunning Jerusalem exhibition, a show Philippe de Montebello, the former director of the Met, recommended be seen more than once.

This was my friend’s first visit and my second. On my first visit to any Met blockbuster show, I prefer to walk through the galleries, taking note of the displays but not studying them in depth. On future visits, I like to use the audio guide with a neck loop that pipes the audio directly into telecoil-equipped hearing aids. I have worn hearing aids in both ears since my 40s when I was diagnosed with progressive hearing loss (I am now 85). I also like to use a script if it’s available.

When we arrived at the audio guide desk, just inside the entrance to the gallery, I tried the headphones but couldn’t hear, so I asked for a neck loop. The young man at the desk did not know what I was asking for. I’ve been volunteering at the Met for 16 years (lucky me!) and have contact information for several staff members, so I promptly sent an SOS email to my supervisor, asking for neck loops.

When a bag of loops arrived (sent up from the Met basement office of Acoustiguide, the Met’s audio guide supplier), I showed the young man how to plug it into the audio guide and explained how it works with my hearing aids by turning on their telecoil switches. I went my happy way, able to hear the in-depth explanations and enjoy the history and beauty of the displays.

During lunch, I emailed my thanks to my supervisor (the Met’s senior museum educator for Access and Community Programs). Even though I knew whom to contact on staff, I know the first step in these situations is to just ask for help. I practice self-advocacy all the time. I’m always polite and patient when I request hearing access, and I follow up with a note of thanks when I get it.

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Because of this approach, I now have friends on staff at cultural institutions in the city, have earned a reputation for appreciating the work they do, and, best of all, have made it possible for other people with hearing loss to have their requests for access in public venues answered promptly and cheerfully.

Become a “hearing access ambassador” in 2019! In addition to helping yourself, your efforts will make life a lot easier for everyone with hearing loss.

Ruth D. Bernstein is a consumer advocate and a board member of the Hearing Loss Association of America’s New York City Chapter, at hearinglossnyc.org. A version of this story originally appeared on the Center for Hearing and Communication website, at chchearing.org.

For references, see hhf.org/winter2019-references.

Share your story: Tell us about your self-advocacy efforts at editor@hhf.org.

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hearing aids 101

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Headphones Plus Hearing Aids: What Works?

By Emily L. Martinson, Au.D., Ph.D

once upon a time, using headphones with hearing aids would have been a challenge, deterring even the most ardent music fan. But with technological advances, being able to enjoy music, videos, or podcasts privately in your ears is much easier to manage.

If you are interested in using headphones with your hearing aids, check with your audiologist or hearing healthcare provider on the best hearing aid–headphone combinations for you. It is likely you’ll have to try out various combinations to see how well they work with your specific hearing loss and hearing aid, along with how comfortable you find them. If you wear glasses, that is another consideration for fit. Here are some ideas to get you started.

Bluetooth hearing aids

The newest hearing aids that have wireless Bluetooth capabilities can take the place of headphones entirely.

These hearing aids can stream music, podcasts, audio from videos, phone calls, and other sounds all directly into the hearing aids—there’s no need to remove hearing aids or use separate headphones. Hearing aids that are billed as “made for iPhone/Android” should have built-in Bluetooth connectivity.

If your hearing aids do not use Bluetooth, the style of your hearing aid and its microphone placement will inform which headphones to use.

In-the-ear (ITE) hearing aids

Since these hearing aids sit deep in the ear canal, you may be able to use almost any headphone style you’d like, from large over-the-ear headphones that cup the ear, on-ear headphones that rest on the ear but do not completely cover it, or even earbuds for the smallest invisible-in-thecanal (IIC) hearing aids. Bone-conduction headphones that rest behind the ear, leaving the ear canal open, may be another option. If you are able, try the headphones to see how they work with your hearing aids before purchasing.

headphones are on. There may be a hearing aid setting or program that works best with the headphones.

Protecting your hearing from loud sounds is very important when wearing headphones, even more so if

Everyone is at risk from noise-induced hearing loss, and that noise can include music. you already have a hearing loss as you want to retain the hearing ability you have. Everyone is at risk from noiseinduced hearing loss, and that noise can include music.

Headphones that have a noise-canceling feature can help because they reduce the level of background noise, eliminating the need to turn up the volume to block out ambient sounds.

Make sure, however, that when using noise-canceling technology or any headphones that you remain aware of your surroundings. Enjoy your music but stay safe!

Behind-the-ear (BTE) hearing aids

In this style of hearing aid, the microphone component hooks on top of and behind the ear. As a result, over-theear headphones that completely cover the ear, including the microphone, may be the best option.

It is not uncommon to hear feedback, a high-pitched ringing sound, when using headphones with hearing aids.

In this case, consult with your hearing healthcare provider, who may need to adjust your hearing aids while the

Emily L. Martinson, Au.D., Ph.D., is an audiologist at Live Better Hearing in Maryland and Virginia. For more, see livebetterhearing.com For references, see hhf.org/winter2019-references.

Support our research: hhf.org/donate a publication of hearing health foundation

winter 2019

23

GIVING IMAGERY TO AN INVISIBLE DISABILITY

By Lauren McGrath

Brazilian-American artist Priscila Soares and her painting “Weight” (above); with her son Jason, who also has a hearing loss (below); and her painting “Creation.”

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hearing loss is not readily visualized. scientifically, hearing loss can be observed as hair cell damage in the cochlea in the inner ear.

This representation is not only an abstract concept to most, but invisible in everyday interactions.

Priscila Soares, an artist and mother of three living in California by way of Brazil, has a different idea about how to portray hearing loss. Introduced to drawing and sculpture by her grandmother as a child, Soares has always been an artist, but not until very recently—well after she developed a bilateral hearing loss—did she give herself permission to actualize her dreams of pursuing art professionally.

The catalyst for Soares’s hearing loss, for which she wears a bone-anchored hearing aid (BAHA), started more than two decades ago. Soares first received a cholesteatoma diagnosis for her right ear at 17, which she believes was the result of many ear infections as a younger child. Cholesteatoma is a destructive skin growth that develops in the middle ear and typically requires removal.

Following a mishap with a surgical procedure, she ended up with a profound hearing loss in her right ear.

At 24, Soares’s left ear showed the same condition. Though the surgery in the left ear was successful, the cholesteatoma had already corroded all three bones in her middle ear, resulting in hearing loss.

Soares’s youngest son, Jason, 12, also has a hearing loss—but with no genetic connection to her own. Undaunted by his diagnosis of moderate to severe hearing loss at birth, Soares was grateful that her own experiences would guide his care. When Jason was just a few months old, she enrolled him in a very supportive preschool for children with hearing loss, where she had worked as an aide for a time. “Working at the preschool allowed me to learn a lot of useful knowledge about hearing loss in children,” she says.

However, when Jason was 2 1/2 years old, his diagnosis was modified to profoundly deaf. Once believing her own hearing loss would be an advantage

family voices

“Creating this painting [‘Abutment,’ below] was freeing for me, because it allowed me to share such an intimate part of myself with others, something that very few people know about,” says Priscila Soares.

to her parenting, the drastic change left Soares frightened, but determined to overcome this challenge together with her son. Today, she is overjoyed that Jason, who hears with cochlear implants, is fully mainstreamed, attends school at grade level, and no longer needs the help of an interpreter or aide.

A few years ago, feeling like something was missing from her life, Soares decided to return full-time to painting, drawing, and sculpting in clay. She not only resolved to create again, but vowed to empower other people with hearing loss through art.

Soares loves to portray the human figure and life’s journeys with tremendous emotion, primarily using acrylic paints, dry pastels, and a homemade clay that looks like porcelain. She is most proud of a painting called “Abutment” (at left), a self-portrait that shows the hardware on her skull that connects to the BAHA. “Creating this painting was freeing for me, because it allowed me to share such an intimate part of myself with others, something that very few people know about,” she says.

Soares’s mission as an artist is to give imagery to an invisible disability. “Hearing loss doesn’t define or disempower who you are,” she says. “It gives you a unique way of experiencing the world that is yours only.”

Priscila Soares lives in California with her family. See her artwork at myluckyears.com. Soares participated in Hearing Health Foundation’s “Faces of Hearing Loss” campaign, at hhf.org/faces. Lauren McGrath is HHF’s marketing manager.

Share your story: Has a hearing or balance condition inspired your career? Tell us at editor@hhf.org.

Support our research: hhf.org/donate a publication of hearing health foundation

winter 2019

25

giving

h e ar i n g h e a lth foundation

PLAN YOUR GIVING FOR IMPACT AND MEANING A lawyer with a hearing loss who specializes in deaf rights details how to optimize donations to a cause he believes in.

By Jared M. Allebest, Esq.

For three consecutive years—2016, 2017, 2018— Hearing Health Foundation has been named one of Consumer Reports’ “Best Charities for Your Donation.”

making a legacy gift to hearing health foundation (hhf) is an option for everyone regardless of age or wealth. Whether you have $100 or $100 million in savings, you have an estate. The same is true if you have a house or car, contribute to an IRA (individual retirement account), or have valuable items such as artwork or a rare stamp collection in your possession.

Additionally, you can make equity donations by giving stocks, bonds, mutual funds, and other properties to HHF while acquiring multiple tax advantages for yourself as the donor. Here is how to donate to HHF through a will or trust, life insurance plan, equity donation, or a charitable gift annuity.

Wills and Trusts

The most common and effective legacy gift is making a simple charitable bequest in your will HHF Giving or living trust because it gives you a lot of control over your property and how it will be distributed.

There is flexibility in your bequest since you can dictate how much you want to give to HHF. You can donate a specific amount of money, leave a percentage of your estate, donate the equity you have in your possession, or give whatever is left of your estate after it has been distributed to the named beneficiaries.

Making a legacy gift is simple. Just add the following language to your will or trust: “I hereby give to Hearing Health Foundation, a 501(c)(3) nonprofit corporation (Tax ID: 13-1882107) with its principal office at 363 Seventh Avenue, 10th Floor, New York, NY 10001-3904, or its successor thereto, ______________ [written amount or percentage of the estate or description of property] for its unrestricted use and purpose.”

The amount can be in dollars or a percentage, but not both.

Life Insurance: Another common way of donating is by naming HHF as a beneficiary of your life insurance policy. Just as with a will or trust, you can determine the dollar amount or percentage of your proceeds that will be given to HHF. The death benefit proceeds are paid directly to the nonprofit from the insurance company that issued the policy. You can either work directly with your insurance agent/company to accomplish this using the beneficiary designation form, or 26

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ask your attorney to include it in your will or trust.

If you wish to include HHF as a beneficiary in your life insurance policy, please let your attorney, financial adviser, or life insurance agent to know that HHF is a 501(c)(3) nonprofit corporation (Tax ID: 13-1882107) with its principal office at 363 Seventh Avenue, 10th Floor, New York, NY 10001-3904.

Equity Donation: Often, many people decide to leave

some or all of their retirement plan assets to either family or charity. It is important to be aware that if you decide to leave an IRA to your heirs or a nonprofit, the beneficiary may be taxed twice. This is because after the assets are diminished by inheritance taxes, the inheritance is further reduced by the income tax the beneficiary will pay on the amount they received.

However, this can be avoided by making a charitable gift to a nonprofit organization by naming the HHF as the beneficiary and leaving other assets to your heirs. The death benefit qualifies for a charitable deduction from your estate, and 100 percent of the assets pass to HHF without being taxed. You can give other assets to your heirs that are not as heavily taxed.

Charitable Gift Annuity: Finally, another way to

make a gift to HHF is with the charitable gift annuity.

This may be a wise way to make a donation if you have substantial cash or appreciated securities but don’t want to give up the annual income you currently earn on your assets. How it works is that you make an irrevocable donation of cash or appreciated securities to the nonprofit organization, and in exchange you get a fixed payment

giving

BRIDGING TWO WORLDS disability rights attorney Jared Allebest was born with a profound bilateral hearing loss. He was diagnosed at age 1 and fitted for hearing aids a year later. He uses both hearing aids and American Sign Language (ASL) to communicate.

Growing up the son of a lawyer in Southern California, Allebest was determined to follow in his father’s footsteps. Throughout his education, he remained inspired by a favorite elementary school teacher who taught him an invaluable lesson: Having a hearing loss isn’t a barrier to success.

“Hearing loss has affected my outlook to fight harder and to push myself to accomplish the things that I want to do in my life,” he says.

After graduating from Thomas Jefferson School of Law in San Diego in 2009, Allebest founded a law firm in Utah that advocates for people with hearing loss and speaking disabilities.

The firm focuses on empowerment

through education, advocacy, and lobbying. He works with clients with both typical hearing and hearing loss and takes on cases relating to disability rights or discrimination, as well as employment, marriage/ divorce, and criminal law.

Allebest says he faces some auditory challenges in his profession. During trials, he has to be exceptionally attentive to all parties, and has an ASL interpreter in the courtroom so he doesn’t miss anything being said.

Despite some difficulty, Allebest believes that his hearing loss is an advantage. His clients are more comfortable with him because they know he can empathize with them.

People listen carefully when he speaks about issues concerning hearing loss. “By fighting for the rights of those who live with hearing loss, I am advocating for myself as well. I think of myself as the bridge between two worlds,” he says.

Allebest’s strong reputation as

of income that is established between you and the nonprofit organization.

Your contribution minus the cost of the annuity is the basis of the charitable tax deduction you receive.

Estate Planning

Regardless of how you want to contribute to HHF in your estate planning, you will want to consult your financial adviser, tax adviser, and/or attorney for the specific tax advantages of your charitable donation. Having an attorney is also helpful because lawyers can make sure any designated use of your bequest is clearly outlined and understood. By including professionals in your estate plans, careful planning can ensure that you realize maximum benefit from your giving.

Jared M. Allebest, Esq., is the founder of Allebest Law Group in Utah, which specializes in disability rights litigation, deaf rights, estate planning, and business planning. Born with a sensorineural hearing loss, Allebest is a participant in HHF’s Faces of Hearing Loss campaign, at hhf.org/faces.

For references, see hhf.org/winter2019-references.

a dedicated lawyer stems from his sincerity and passion for helping others with legal issues that are deeply personal to him, and his advocacy for the hearing loss community outside goes beyond the courtroom. The former chair of Loop Utah, an advocacy group dedicated to educating people about the benefits of loop technology, he is a community representative for advisory council of the Utah Division of Services to the Deaf and Hard of Hearing, providing input to schools on programs and services for students with hearing loss.

Because he knows he cannot be the connection between the legal world and the hearing loss world for everyone, Allebest says the most important part of living with hearing loss is effective self-advocacy. “Being assertive about your needs will help you to hear better, be more productive, and be happier.” —Vicky Chan

HHF sincerely thanks our donors for their ongoing support of our mission to prevent, research, and cure hearing loss and tinnitus through groundbreaking research and to promote hearing health.

Please contact us with any questions about our mission, programs, or how to donate at 212.257.6140 (TTY 888.435.6104) or development@hhf.org.

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

Support our research: hhf.org/donate

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>> giving

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JOIN OUR

HHF Giving

Inner Ear Circle

when you start your monthly commitment to HHF, you join our Inner Ear Circle, helping to ensure our researchers have the resources needed to sustain their work without interruption.

“Research is not effective when it happens in fits and starts. Consistency is necessary to find safe and effective ways to promote lasting advancements for hearing in humans,” says Hearing Restoration Project scientist Jennifer S. Stone, Ph.D., of the University of Washington School of Medicine.

In addition to improving the lives of individuals with hearing and balance conditions through innovative, groundbreaking research, your monthly contribution creates a greater impact by making your dollar go further.

Please join our Inner Ear Circle, where you’ll earn special recognition in HHF’s Annual Report, and be confident that 100 percent of your monthly contribution allows our research programs to thrive because reliable scientific outcomes require time and stability. To underscore our fiscal responsibility, HHF continues to earn top ratings with all charity watchdogs, and made the Consumer Reports list of “Best Charities for Your Donation” for the third year in a row.

TOO FUNNY for

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» Sustained support of life-changing research » Knowing your contribution consistently goes where you want it » Reduced administrative efforts and cost » Savings on postage and paper with fewer mailings printed

Words

captions and subtitles are a critical tool that makes information more accessible to those with hearing loss. The technology is constantly evolving, especially real-time captioning that can be available on the go, often using smartphones.

The 1990 Americans With Disabilities Act (ADA) requires businesses and public venues to guarantee that people with hearing loss are not excluded from or denied services because of the lack of auxiliary aids, and this includes captioning.

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A monthly donation translates to:

But sometimes the subtitles can fall short, creating unintentionally funny gaffes that may end up going viral.

So without intending any criticism of this important accessibility method, which is so helpful for those with (and without) hearing loss to better understand speech, we are launching a fun contest—because everyone loves bloopers, and it’s a good reminder that captioning has actually improved by leaps and bounds.

giving

CREATE A HEARING HEALTH Legacy planned giving donors provide essential philanthropic support that enables HHF to remain the country’s largest nonprofit funder of hearing and balance research. The Hearing Health Legacy was established to recognize and thank these extraordinary individuals.

Giving options include gifts in wills, living trusts, or beneficiary designations of retirement plans, brokerage accounts, and life insurance policies. These giving options offer HHF supporters creative and flexible strategies to pursue financial goals while supporting important research and program work.

HHF was founded in 1958 because of the vision, strength, and determination of the late Collette Ramsey Baker. After living with a substantial hearing loss for many years, surgery restored Ramsey Baker’s hearing. In gratitude, she created the Deafness Research Foundation, now known as Hearing Health Foundation, to support research to further hearing loss treatments, prevention, and cures.

Under Ramsey Baker’s leadership, HHF bestowed grants upon universities and other institutions. Her work was praised by Presidents Hoover and Eisenhower as well as Helen Keller and Cardinal Francis Spellman. She was also listed in Who’s Who for Women.

HHF is grateful to be able to carry on this legacy and give our deepest thanks to those who have joined us in this vital tradition of support. Please visit hhf.org/legacy to learn more.

BREAKING

Holiday closures and schedules

Collette Ramsey Baker founded Deafness Research Foundation, now known as Hearing Health Foundation, in gratitude for surgery that restored her hearing.

??? ( The Caption Challenge ) Submit an original photo or screenshot of a memorable caption flub, and earn a chance to be featured in the Spring 2019 issue of Hearing Health and on our website. Visit hhf.org/challenge to review the full contest rules and to enter.

Submissions will be accepted until Friday, March 1.

Four magical antelopes spoke at city hall to lettuce

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Why We Give HHF supporters share why they donate.

HHF Giving

“I’m 55 and lost all hearing “I give in honor of my son in my right ear about 15 Ryan, who lost the hearing in years ago. Was told it was one ear seven years ago. The research you are doing on hair a virus. It vanished in five cell regrowth could bring back seconds. My hope would his hearing. He is 25 years old, be to some day hear out of it again. We’re rooting for and I pray that your research you!” —Ned C., Illinois leads to the return of hearing for all affected.”

—Kellie J., Pennsylvania “I donate for all the good work that Hearing Health Foundation has done and “I am a bilateral cochlear implant parent with a bilateral continues to do. I also get cochlear implant daughter. We your wonderful publication can trace four generations with and make a point of dropping it off at my hereditary hearing loss, all audiologist’s office waiting starting at different ages. room when I am finished, Thank you for your work.” hoping someone will —Harold T., Connecticut benefit from reading the magazine and of course “Finding a way to regrow use the enclosed envelope sensory cells in the human to make a donation!” inner ear would be an answer —Sarah H., Colorado to my prayers! Thank you!”

—Lisa H., Utah

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meet the fundraiser

A LITERARY AGENT FOR CHANGE

By Irene Goodman

Irene Goodman with her son in a photo from around 2009, just before she began regular online auctions of her book manuscript critiques to benefit HHF.

the hardest part was the diagnosis. we were so devastated that for a while we were paralyzed.

My son was diagnosed at age 20 with Usher syndrome, a genetic condition that causes a progressive loss of both hearing and vision.

We already knew about the hearing loss because he was born with it.

So his great strength had always been his vision. He wanted to be a filmmaker. And now all that was going to be taken away from him.

What do you do when you’re in the depths? I have always been a doer. I’d rather do something than gripe. It makes me feel better.

So I turned to my work as a solution. I have been a top literary agent in New York for 40 years, with many bestsellers to my credit and a dynamic team of agents. I decided to use my experience and expertise to give back to the publishing community and support the causes I care about at the same time. In December 2009, I auctioned off 25 critiques of partial manuscripts on eBay, with all proceeds going to Hearing Health Foundation and the Foundation Fighting Blindness.

This was very successful, and I continued to auction two or three critiques every month.

Now it’s nine years later, and we’ve moved the auctions to the Charity Buzz website because they raise more money. Please visit irenegoodman.com or search for my name on charitybuzz.com to participate in an auction. It’s fun, and the last few minutes are always exciting as the bidding becomes intense.

Since starting these auctions, I have raised around $200,000—and counting—for the causes our family supports. My husband, Alex Kamaroff, is an artist and he recently opened an art gallery called Glendale Brook Studio in Massachusetts. Part of every art sale will go to our causes, too. In the year before opening the gallery, he sold 40 paintings to local businesses and restaurants, raising $8,000.

Meanwhile, my son has learned to live with his condition. It’s not just a matter of coping. It’s a matter of just getting on with it.

I wish I could tell you that he is doing great, but he struggles every single day—not just with the obvious, but with the emotional underpinnings. It’s not easy.

Why do we give? Because we believe in science, and the medical advances are so promising. For me, it’s because I have spent my entire adult life in book publishing and it is very gratifying to give back to the community that I know and love. Fledgling writers have a place to go to hear the truth and to benefit from 40 years of experience. It makes them happy to learn all that I know, it makes me happy to share it, and it makes our family happy to raise funds for research.

Irene Goodman lives with her family in New York and Massachusetts.

To learn more about Goodman’s auctions and her agency, search for her name on charitybuzz.com and irenegoodman.com.

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ON A DATA-DRIVEN MISSION

By Peter G. Barr-Gillespie, Ph.D.

The goal of Hearing Health Foundation’s Hearing Restoration Project (HRP) is to determine how to regenerate inner ear sensory cells in humans to eventually restore hearing.

These sensory 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. The HRP is tasked with uncovering how to replicate this regeneration process in humans.

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the annual meeting of the hearing restoration project (HRP) consortium was held in Seattle in November 2018. We used this meeting to update one another on recent progress on Hearing Health Foundation-funded projects, discuss in detail the implications of new data, evaluate the directions of ongoing projects, and plan for the next funding period.

As you may recall, in November 2016 the HRP made a deliberate turn toward funding only the highest-impact science that our group leads the world in investigating—we have termed this the “Seattle Plan.” We therefore devoted a substantial portion of our efforts to cross-species comparisons that contrast molecular responses to inner ear sensory hair cell damage in species that regenerate their hair cells, especially chickens and fish, with responses in mice, which like other mammals do not regenerate their hair cells. We also have been examining the “epigenetic” structure of key genes in the mouse, as one hypothesis is that epigenetic modifications of the DNA—that is, the inactivation of genes through chemical changes to the DNA—causes mouse (and human) cells of the cochlea to no longer respond to hair cell damage by regenerating hair cells.

I am happy to report that progress over the past two years on these two major projects has been outstanding. For the cross-species comparisons, Stefan Heller, Ph.D., and Tatjana Piotrowski, Ph.D., reported on single cell analysis of, respectively, chick and fish hair cell organs responding to damage. Using single cell analysis— isolating hundreds to thousands of individual cells and quantifying all of the protein-assembly messages they express—we can determine the molecular pathways by which hair cells are formed during development and regeneration. This approach has always been promising, but this year we have begun to reap the expected benefits, as those projects have given us an unprecedented view of hair cell formation.

The epigenetics project overseen by Neil Segil, Ph.D., has now reached maturity, and using the voluminous data acquired over the past several years his lab has shown how supporting cells (from which we intend to regenerate hair cells) change the epigenetic modification of their DNA so they no longer are able to switch on key genes used for turning them into hair cells. A topic of great interest at the meeting was that of genetic reprogramming: Can we use genes (like transcription factors, proteins that control the transfer of genetic information) or small molecules (which often can be taken orally and still reach their targets) to overcome the epigenetic modification and push supporting cells to turn into hair cells? Preliminary results from Segil’s lab and from others in the field make us optimistic that the reprogramming approach will eventually be part of a regeneration strategy.

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photo credit: heller lab/stanford university

A topic of great interest at the meeting was that of genetic reprogramming: Can we use genes (like transcription factors, proteins that control the transfer of genetic information) or small molecules (which often can be taken orally and still reach their targets) to overcome the epigenetic modification and push supporting cells to turn into hair cells?

We also heard from Seth Ament, Ph.D., a bioinformatics expert we recently recruited to the HRP to explicitly compare our various datasets and find the common threads between them. Ament has used gene expression data from the chick, fish, and mouse, as well as the epigenetic data from the mouse, to hypothesize which genes may be important for hair cell regeneration. As a systems biology specialist, Ament brings a fresh eye to the field of auditory science and has not only identified some of the genes we expected to be important, but new ones as well. His success nicely justifies our cross-species approach, and the bioinformatics comparisons that he has been able to achieve in his initial HRP project have been impressive.

Finally, two other Seattle Plan projects have gone well, including our data-sharing platform called the gEAR (gene Expression Analysis Resource), developed by Ronna Hertzano, M.D., Ph.D., which allows us to analyze our data privately but also to efficiently share data with the public. In addition, John Brigande, Ph.D., reported on his project developing mouse models for testing interesting new genes; his group will be adding several powerful models in the year to come.

The excitement at the meeting extended to our future plans. We agreed that the Seattle Plan was the still the proper course, and we eagerly anticipate more data and results to come from our consortium of researchers. We are truly getting a clearer picture of hair cell regeneration due to the HRP’s efforts. That said, there is a long way to go; our efforts show us how surprisingly intricate biology is, despite knowing from the start that systems like the inner ear are remarkably complex. Nature always has surprises for us, by turns dashing treasured hypotheses while revealing unexpected mechanisms. The HRP is most definitely on track for success, and all of us in the HRP sincerely thank you for your continued support.

HRP scientific director Peter G. Barr-Gillespie, Ph.D., is the chief research officer and executive vice president at Oregon Health & Science University (OHSU). He is also a professor of otolaryngology at the Oregon Hearing Research Center and a senior scientist at the Vollum Institute, both also at OHSU. For more, see hhf.org/hrp.

Avian and mammal supporting cell subtypes differ, but HRP consortium member Stefan Heller, Ph.D., and team are investigating whether an evolutionary homogenous equivalent exists in the organ of Corti, and if this knowledge could be used for hair cell regeneration.

Support our research: hhf.org/donate

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EMERGING RESEARCH GRANTS

Recent Research by Hearing Health Foundation Scientists, Explained

The two Emerging Research Grants scientists on the following pages each received the Les Paul Foundation Award for Tinnitus Research. HHF sincerely thanks the Les Paul Foundation for its generous support of research into the mechanisms, causes, diagnosis, and treatment of tinnitus.

Overall, it appears that central inhibition is atypical in adults with typical hearing and tinnitus, and that this is not related to hearing loss as measured in clinically or non-clinically tested frequency regions. The cause of decreased inhibition in this population remains unknown, but genetic factors may play a role.

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Measuring Brain Signals Leads to Insights Into Mild Tinnitus tinnitus, or the perception of sound where none is present, has been estimated to affect approximately 15 percent of adults. Unfortunately, there is no cure for tinnitus, nor is there an objective measure of the disorder, with professionals relying instead upon patient report.

There are several theories as to why tinnitus occurs, with one of the more prevalent hypotheses involving decreased inhibition. Neural inhibition is a normal function throughout the nervous system, and works in tandem with excitatory neural signals for accomplishing tasks ranging from motor output to the processing of sensory input. In sensory processing, such as hearing, both inhibitory and excitatory neural signals depend on external input.

For example, if an auditory signal cannot be relayed through the central auditory pathways due to cochlear damage resulting in hearing loss, both central excitation and inhibition may be reduced. This reduction in auditory-related inhibitory function may result in several changes in the central nervous system, including increased spontaneous neural firing, neural synchrony, and reorganization of cortical regions in the brain.

Such changes, or plasticity, could possibly result in the perception of tinnitus, allowing signals that are normally suppressed to be perceived by the affected individual.

Indeed, tinnitus has been reported in an estimated 30 percent of those with clinical hearing loss over the frequency range of 0.25 to 8 kilohertz (kHz), suggesting that cochlear damage and tinnitus may be interconnected.

However, many individuals with clinically normal hearing report tinnitus. Therefore, it is possible that in this specific population, inhibitory dysfunction may not underlie these phantom perceptions, or may arise from a different trigger other than hearing loss.

One measure of central inhibition is sensory gating.

Sensory gating involves filtering out signals that are repetitive and therefore unimportant for conscious perception. This automatic process can be measured through electrical responses in the brain, termed cortical auditory evoked potentials (CAEPs). CAEPs are recorded via EEG (electroencephalography) using noninvasive sensors to record electrical activity from the brain at the level of the scalp.

In healthy gating function, it is expected that the CAEP response to an initial auditory signal will be larger in amplitude when compared with a secondary CAEP

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A research assistant demonstrates the EEG sensors used to noninvasively record electrical brain activity related to central inhibition.

response elicited by the same auditory signal. This illustrates the inhibition of repetitive information by the central nervous system. If inhibitory processes are dysfunctional, CAEP responses are similar in amplitude, reflecting decreased inhibition and the reduced filtering of incoming auditory information.

Due to the hypothesis that atypical inhibition may play a role in tinnitus, we conducted a study to evaluate inhibitory function in adults with normal hearing, with and without mild tinnitus, using sensory gating measures.

To our knowledge, sensory gating had not been used to investigate central inhibition in individuals with tinnitus.

We also evaluated extended high-frequency auditory sensitivity in participants at 10, 12.5, and 16 kHz—which are frequencies not included in the usual clinical evaluation— to determine if participants with mild tinnitus showed hearing loss in these regions.

Tinnitus severity was measured subjectively using the Tinnitus Handicap Index. This score was correlated with measures of gating function to determine if tinnitus severity may be worse with decreased inhibition.

Our results, published in Audiology Research on Oct. 2, 2018, showed that gating function was impaired in adults with typical hearing and mild tinnitus, and that decreased gating was significantly correlated with tinnitus severity.

In addition, those with tinnitus did not show significantly different extended high-frequency thresholds in comparison to the participants without tinnitus, but it was found that better hearing in this frequency range related to worse tinnitus severity.

This result conflicts with the theory that hearing loss may trigger tinnitus, at least in adults with typical hearing. It may indicate that these individuals possess heightened auditory awareness, although this hypothesis should be directly tested.

Overall, it appears that central inhibition is atypical in adults with typical hearing and tinnitus, and that this is not related to hearing loss as measured in clinically or non-clinically tested frequency regions. The cause of decreased inhibition in this population remains unknown, but genetic factors may play a role. We are currently investigating the use of sensory gating as an objective clinical measure of tinnitus, particularly in adults with hearing loss, as well as the networks in the brain that may underlie dysfunctional gating processes. —Julia Campbell, Au.D., Ph.D. A 2016 ERG scientist who received the Les Paul Foundation Award for Tinnitus Research, Julia Campbell, Au.D., Ph.D., CCC-A, FAAA, is an assistant professor in communication sciences and disorders in the Central Sensory Processes Laboratory at the University of Texas at Austin.

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This figure shows the quinine effect on the physiology of dopaminergic neurons in the substantia nigra, a structure in the midbrain.

Disrupted Nerve Cell Function and Tinnitus tinnitus is a condition in which one hears a ringing and/or buzzing sound in the ear without an external sound source, and as a chronic condition it can be associated with depression, anxiety, and stress.

Tinnitus has been linked to hearing loss, with the majority of tinnitus cases occurring in the presence of hearing loss. For military service members and individuals who are constantly in an environment where loud noise is generated, it is a major health issue.

During this phantom ringing/buzzing sensation, neurons in the auditory cortex continue to fire in the absence of a sound source, or even after deafferentation following the loss of auditory hair cells. The underlying mechanisms of tinnitus are not yet known.

In our paper published in the journal Neurotoxicity Research in July 2018, my team and I examined chemical-induced tinnitus as a side effect of medication.

Tinnitus patients who have chemical-induced tinnitus comprise a significant portion of all tinnitus sufferers, and approaching this type of tinnitus can help us to understand tinnitus in general.

We focused on quinine, an antimalarial drug that also causes hearing loss and tinnitus. We theorized this is due to the disruption of dopamine neurons rather than cochlear hair cells through the blockade of neuronal ion channels in the auditory system. We found that dopamine neurons are more sensitive than the hair cells or ganglion neurons in the auditory system. To a lesser extent, quinine also causes muscle reactions such as tremors and spasms (dystonia) and the loss of control over body movements (ataxia).

As dopaminergic neurons (nerve cells that produce the neurotransmitter dopamine) are implicated in playing a role in all of these diseases, we tested the toxicity of quinine on induced dopaminergic neurons derived from human pluripotent stem cells and isolated dopaminergic neurons from the mouse brain.

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This toxicity of quinine may underlie the movement disorders and depression seen in quinine overdoses (cinchonism), and understanding this mechanism will help to learn how dopamine plays a role in tinnitus modulation. function of dopamine neurons in humans and mice.

Specifically, we found it can target and disturb the hyperpolarization-dependent ion channels in dopamine neurons. This toxicity of quinine may underlie the movement disorders and depression seen in quinine overdoses (cinchonism), and understanding this mechanism will help us learn how dopamine plays a role in tinnitus modulation. —Xiping Zhan, Ph.D. A 2015 ERG scientist, Xiping Zhan, Ph.D., received the Les Paul Foundation Award for Tinnitus Research. He is an assistant professor of physiology and biophysics at Howard University in Washington, D.C. One figure from the paper appeared on the cover of the July 2018 issue of Neurotoxicity Research.

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Recording Electrical Responses to Improve the Diagnosis of Hearing Conditions electrocochleography (ecochg) is a method to record electrical responses from the inner ear and the auditory nerve in the first 5 milliseconds after a sound stimulus, such as a click or tone burst. These stimuli can be adjusted for repetition rate and polarity, and recordings can also be taken from either the ear canal or eardrum, or through the eardrum. The main components of ECochG response are the summating potential (SP), from the sensory hair cells in the cochlea, and the action potential (AP) of auditory nerve fibers. In a 2018 paper published in the journal Canadian Audiologist, 2015 ERG scientist Wafaa Kaf, Ph.D., reviews the diagnostic applications for using ECochG for Ménière’s disease and cochlear synaptopathy, two conditions that can be difficult to pinpoint, especially early in the disease, and suggests how to improve the use of ECochG as a clinical tool.

Endolymphatic hydrops, or abnormal fluctuations in inner ear fluid, is believed to be the underlying cause of Ménière’s disease and its associated hearing and balance disorder. ECochG collects information about the SP/AP amplitude and area ratios that can be used to confirm a Ménière’s diagnosis, without relying solely on clinical symptoms.

Since the SP/AP amplitude ratio can vary among known Ménière’s patients, Kaf suggests including data about the SP/AP area ratio as well can help with diagnosing the disease. To further distinguish Ménière’s, Kaf suggests using ECochG AP latencies, and, building on her prior research, the effect of fast click rates on the auditory nerve latency and amplitude. Using the continuous loop averaging deconvolution technique, various properties of the SP and AP waveforms are easier to identify and parse. Results suggest that the functions of the cochlear nerve and/or cochlear synapses are damaged in Ménière’s.

Earlier research that shows an abnormal acoustic reflex decay in about a quarter of Ménière’s patients, and a reduced number of synapses between inner hair cells and auditory nerve fibers, underscores the presence of nerve damage in Ménière’s.

Cochlear synaptopathy is a noise-induced or age-related dysfunction that is also causing reduced synapses between inner ear hair cells and auditory nerve fibers, resulting in tinnitus, hyperacusis, and difficulty hearing in noise

Cochlear synaptopathy is a noise-induced or age-related dysfunction that is also causing reduced synapses between inner ear hair cells and auditory nerve fibers, resulting in tinnitus, hyperacusis, and difficulty hearing in noise despite normal hearing sensitivity. despite normal hearing sensitivity. ECochG may help with its diagnosis, especially given that traditional audiograms and hearing tests have been found to miss this “hidden hearing loss.” The use of both the SP/AP amplitude and area ratios and specific auditory brainstem responses can help confirm this condition and distinguish it from Ménière’s disease.

ECochG can also be used to help confirm the diagnosis of auditory neuropathy spectrum disorder, a problem with the way sound is transmitted between the inner ear and the brain, and other inner ear disorders. The technique can also be used to monitor ear responses in real-time, during surgeries such as a stapedectomy, endolymphatic shunt, and cochlear implantation—all additional instances demonstrating how ECochG holds promise for expanded use in the clinic. —Yishane Lee A 2015 ERG scientist funded by The Estate of Howard F. Schum, Wafaa Kaf, Ph.D., is a professor of audiology at Missouri State University.

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Detailing the Relationships Between Auditory Processing and Cognitive-Linguistic Abilities in Children The two Emerging Research Grants scientists on the following pages were each generously funded by the General Grand Chapter Royal Arch Masons International, for their innovative work investigating difficulties with how the brain processes sound, a condition known as central auditory processing disorder (CAPD).

Empirical evidence from hearing, language, and cognitive science helps explain the relationships between children’s auditory processing abilities and cognitive abilities such as memory and attention.

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children suspected to have or who are diagnosed with auditory processing disorder (APD) present with difficulty understanding speech despite typical-range peripheral hearing and typical intellectual abilities. Children with APD (also known as central auditory processing disorder, CAPD) may experience difficulties while listening in noise, discriminating speech and non-speech sounds, recognizing auditory patterns, identifying the location of a sound source, and processing time-related aspects of sound, such as rapid sound fluctuations or detecting short gaps between sounds. According to 2010 clinical practice guidelines by the American Academy of Audiology and a 2005 American Speech-Language-Hearing Association (ASHA) report, developmental APD is a unique clinical entity. According to ASHA, APD is not the result of cognitive or language deficits.

In our July 2018 study in the journal Language Speech and Hearing Services in the Schools for its special issue on “working memory,” my coauthor and I present a novel framework for conceptualizing auditory processing abilities in school-age children. According to our framework, cognitive and linguistic factors are included along with auditory factors as potential sources of deficits that may contribute individually or in combination to cause listening difficulties in children.

We present empirical evidence from hearing, language, and cognitive science in explaining the relationships between children’s auditory processing abilities and cognitive abilities such as memory and attention.

We also discuss studies that have identified auditory abilities that are unique and may benefit from assessment and intervention. Our unified framework is based on studies from typically developing children; those suspected to have APD, developmental language impairment, or attention deficit disorders; and models of attention and memory in children. In addition, the framework is based on what we know about the integrated functioning of the nervous system and evidence of multiple risk factors in developmental disorders. (A schematic of this framework is shown on the opposite page.)

For example, in this study we discuss how traditional APD diagnostic models show remarkable overlap with models of working memory (WM). WM refers to an active memory system that individuals use to hold and manipulate information in conscious awareness. Overlapping components among the models include verbal short-term memory capacity (auditory decoding and memory), integration of audiovisual information and information from long-term memory, and central executive functions such as attention and organization. Therefore, a deficit in the WM system can also potentially mimic the APD profile.

Similarly, auditory decoding (i.e., processing speech sounds), audiovisual integration, and organization abilities can influence language processing at various levels of complexity. For example, poor phonological (speech sound) processing abilities, such as those seen in some children with primary language impairment or dyslexia, could potentially lead to auditory processing profiles that correspond to APD. Auditory memory and auditory sequencing of spoken material are often challenging for children diagnosed with APD. These are the

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LISTENING DIFFICULTIES

Auditory Processing

Cognition e.g., attention, working memory

This novel framework for conceptualizing auditory processing abilities in school-age children includes cognitive and linguistic factors along with auditory factors.

Language Processing

same integral functions attributed to the verbal shortterm memory component of WM. Such observations are supported by the frequent co-occurrence of language impairment, APD, and attention deficit disorders.

Furthermore, it is important to note that cognitivelinguistic and auditory systems are highly interconnected in the nervous system. Therefore, heterogeneous profiles of children with listening difficulties may reflect a combination of deficits across these systems. This calls for a unified approach to model functional listening difficulties in children.

Given the overlap in developmental trajectories of auditory skills and WM abilities, the age at evaluation must be taken into account during assessment of auditory processing. The American Academy of Audiology does not recommend APD testing for children developmentally younger than age 7. Clinicians must therefore adhere to this recommendation to save time and resources for parents and children and to avoid misdiagnosis.

However, any significant listening difficulties noted in children at any age (especially at younger ages) must call for a speech-language evaluation, a peripheral hearing assessment, and cognitive assessment. This is because identification of deficits or areas of risk in language or cognitive processing triggers the consideration of cognitive-language enrichment opportunities for the children. Early enrichment of overall language knowledge and processing abilities (e.g., phonological/speech sound awareness, vocabulary) has the potential to improve children’s functional communication abilities, especially when listening in complex auditory environments.

Given the prominence of children’s difficulty listening in complex auditory environments and emerging evidence suggesting a distinction of speech perception in noise and spatialized listening from other auditory and cognitive

factors, listening training in spatialized noise appears to hold promise in terms of intervention. This needs to be systematically replicated across independent research studies.

Other evidence-based implications discussed in our publication include improving auditory access using assistive listening devices (e.g., FM systems), using a hierarchical assessment model, or employing a multidisciplinary front-end screening of sensitive areas (with minimized overlap across audition, language, memory, and attention) prior to detailed assessments in needed areas.

Finally, we emphasize that prevention should be at the forefront. This calls for integrating auditory enrichment with meaningful activities such as musical experience, play, social interaction, and rich language experience beginning early in infancy while optimizing attention and memory load. While these approaches are not new, current research evidence on neuroplasticity makes a compelling case to promote auditory enrichment experiences in infants and young children. —Beula Magimairaj, Ph.D. A 2015 ERG scientist generously funded by the General Grand Chapter Royal Arch Masons International, Beula Magimairaj, Ph.D., is an assistant professor in the department of communication sciences and disorders at the University of Central Arkansas. Magimairaj’s related ERG research on working memory appears in the Journal of Communication Disorders, and she wrote about an earlier paper from her ERG grant in the Summer 2018 issue, at hhf.org/magazine.

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Of Mice, Men, and Octopi: Or, Learning More About How the Brain Processes Speech

The human ability to understand speech is a combination of basic acoustic detection combined with higher-order, phonetic processing that incorporates learning and memory.

everyday listening situations require concurrent processes to not only recognize but also apply time-stamps to distinct sound elements while separating them from ongoing background noise. The brain’s decoding of the acoustic scene, known as auditory streaming, includes speech perception. For the brain to make sense of communication sounds, it must recognize distinct acoustic units, such as phonemes and syllables, whose acoustic “boundaries” are perceptible even by infants. This is the difference between hearing, for example, “she got an allergy shot” vs. “she got a scholarship.”

The human ability to understand speech is a combination of basic acoustic detection combined with higher-order, phonetic processing that incorporates learning and memory. Richard A. Felix II, Ph.D., a 2016 ERG scientist, and team have been investigating the roles played by “bottom-up,” lower-level sensory processes compared with “top-down,” higher-level cognition.

The team has been using a mouse model to glean insights into auditory processing mechanisms common to all mammals and that underpin the acquisition of language.

The onset of sound is a cue that alerts the brain to new, incoming acoustic input. The auditory system is highly sensitive to abrupt or loud or high-pitched sound components, specifically through “octopus cells” (with tentacle-like dendrites) in the brainstem’s cochlear nucleus. Octopus cells have been shown to have a precise time-locked firing (spiking) response to the onset of broadband sound stimuli. These cells target the auditory brainstem region called the superior paraolivary nucleus (SPON), which has been shown to be involved in the processing of rhythmic sounds. The SPON demonstrates a sound-triggered onset spiking response, sometimes alongside an offset spiking response. It is thought that this onset/offset combination helps represent natural sounds such as vocalizations.

Testing neural reactions using a variety of sound frequencies and intensities, including mouse calls, Felix and colleagues detail the role of the SPON in extracting vocal communication information. In a paper published in the European Journal of Neuroscience on July 18, 2018, the team’s study helps explain the onset and offset spiking responses of these auditory brainstem neurons in terms of decoding natural sounds. The researchers show that the broadly tuned, onset spike may improve the signal-to-noise ratio to aid in understanding a subsequent, frequency-specific peak. As a result, the SPON may provide a dual inhibition mechanism that allows the tracking of the starts and ends of phonetic units in speech in order to send accurate speech-sound signals bottom up to the brain. —Y.L. A 2016 ERG recipient generously funded by the General Grand Chapter Royal Arch Masons International, Richard A. Felix II, Ph.D., is a postdoctoral researcher in the Hearing and Communications Lab at Washington State University Vancouver.

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research

HHF sincerely thanks the Children’s Hearing Institute for its support of innovative research focused on congenital and acquired childhood hearing loss and its etiology, assessment, diagnosis, and treatment.

New Insights into the Development of the Hair Cell Bundle recent genetic studies have identified that the protein ripor2 (formerly known as Fam65b) is an important molecule for hearing. It localizes to the stereocilia of auditory hair cells and causes deafness when mutations disrupt its function.

In a study published in the Journal of Molecular Medicine in November 2018, Oscar Diaz-Horta, Ph.D., a 2017 ERG scientist, and colleagues further show the role the protein plays by demonstrating how it interacts with other proteins during the development of the hair cell bundle. The team found that the absence of Ripor2 changes the orientation of the hair cell bundle, which in turn affects hearing ability.

Ripor2 interacts with Myh9, a protein encoded by a known deafness gene, and Myh9 is expressed in the hair cell bundle stereocilia as well as its kinocilia (apices). The team found that the absence of Ripor2 means that Myh9 is low in abundance. In the study, Ripor2-deficient mice developed hair cell bundles with atypically localized kinocilia and reduced abundance of a phosphorylated form of Myh9. (Phosphorylation is a cellular process critical for protein function.)

Another specific kinociliary protein, acetylated alpha tubulin, helps stabilize cell structures. The researchers found it is also reduced in the absence of Ripor2.

The study concludes that Ripor2 deficiency affects the abundance and/ or role of proteins in stereocilia and kinocilia, which negatively affects the structure and function of the auditory hair cell bundle. These newly detailed molecular aspects of hearing will help to better understand how, when these molecular actions are disrupted, hearing loss occurs. —Y.L. A 2017 ERG scientist funded by the Children’s Hearing Institute (CHI), Oscar Diaz-Horta, Ph.D., was an assistant scientist in the department of human genetics at the University of Miami. He passed away suddenly in August 2018, while this paper was in production. HHF and CHI both send our deepest condolences to Diaz-Horta’s family and colleagues.

EMERGING RESEARCH GRANTS For references, see hhf.org/winter2019-references.

To learn more about the Emerging Research Grants program and scientists, see hhf.org/erg and Meet the Researcher at hhf.org/mtr.

Support our research: hhf.org/donate

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EMERGING RESEARCH GRANTS

ERG ALUMNI

Making Headlines The cornerstone of Hearing Health Foundation for six decades has been funding early-career hearing and balance researchers through its Emerging Research Grants (ERG) program. Many ERG scientists have gone on to obtain prestigious National Institutes of Health (NIH) funding to continue their HHF-funded research; since 1958, each dollar awarded to ERG scientists by HHF has been matched by NIH investments of more than $90.

Within the scientific community, ERG is a competitive grant awarded to the most promising investigators.

ERG alumni continue to make headlines in the mainstream news for their scientific breakthroughs. Here are details about recently published papers: the use of genome editing to disable the effects of a mutated gene leading to hearing loss; the discovery of a key gene for age-related hearing loss and how it functions; a promising tinnitus treatment that tames misfiring neurons in the brainstem; and the activation of a specific signaling pathway that leads to “apparent supernumerary hair cell formation” in mice.

Zheng-Yi Chen, D.Phil. (1995 ERG scientist) Massachusetts Eye and Ear/Harvard Medical School associate professor Chen and colleagues delivered a CRISPR/Cas9 genome editing complex directly into the inner ear hair cells of mice, preventing hearing loss in an animal model of genetic progressive deafness. The CRISPR/Cas9 therapy disabled a mutated form of the gene Tmc1, the first time that a gene editing protein has been ferried directly into the relevant cells to halt progression of genetic hearing loss.

A single-letter mutation in the gene Tmc1 and carrying only one of two copies of the mutated gene both lead to progressive hearing loss in mice and humans. With the mutated gene disabled, the inner ear hair cells survive, and mice otherwise genetically destined to become deaf retained a portion of their hearing. Publishing in the Dec. 20, 2017, issue of Nature, the team reported that at four weeks, untreated mice were unresponsive to sound below an average of 80 decibels, while treated mice responded to sound at approximately 65 decibels. At eight weeks, treated mice also retained their instinctive physical “startle” response to sudden loud sound, while 42

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the untreated mice did not respond. The researchers said delivering the Cas9 protein itself locally, instead of DNA elements that the cell can use to build Cas9, improved the DNA specificity and potential safety of the treatment.

Ronna Hertzano, M.D., Ph.D. (2009–10) Hearing Restoration Project consortium member Hertzano, an associate professor at the University of Maryland School of Medicine, and colleagues identified a gene, Ikzf2, that acts as a key regulator for outer hair cells whose loss is a major cause of age-related hearing loss.

The Ikzf2 gene encodes helios, a transcription factor (a protein that controls the expression of other genes). The mutation of the gene in mice impairs the activity of helios in the mice, leading to an outer hair cell deficit.

Reporting in the Nov. 21, 2018, issue of Nature, the team tested whether the opposite effect could be created—if an abundance of helios could boost the population of outer hair cells. They introduced a virus engineered to overexpress helios into the inner ear hair cells of newborn mice, and found that some mature inner hair cells became more like outer hair cells by exhibiting electromotility, a

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research

Fusiform cells, the main neurons in the brainstem’s dorsal cochlear nucleus region, help the brain focus on where sounds are coming from, and help tune out sensations that result from the movement of our own head and neck. Loud noise can trigger a change in the nerve cells’ activity—altering its timing so that the cells fire off synchronized signals spontaneously instead of waiting for an actual sound from the environment. This phantom signal is transmitted into other centers where perception occurs. property limited to outer hair cells. The finding that helios can drive inner hair cells to adopt critical outer hair cell characteristics holds promise for future treatments of age-related hearing loss.

Susan Shore, Ph.D. (1987 and 1992–95) In a double-blind clinical trial with 21 subjects, University of Michigan Medical School professor Shore and team showed an experimental device could help people with tinnitus (hearing ringing or buzzing in the absence of an external sound source). Fusiform cells, the main neurons in the brainstem’s dorsal cochlear nucleus region, help the brain focus on where sounds are coming from, and help tune out sensations that result from the movement of our own head and neck (known as somatosensory inputs). The team’s previous work in animals showed that loud noise can trigger a change in the nerve cells’ activity—altering its timing so that the cells fire off synchronized signals spontaneously instead of waiting for an actual sound from the environment.

This phantom signal is transmitted into other centers where perception occurs. To stop the signal, the device uses “bimodal auditory-somatosensory stimulation,” which plays a sound into the ears, alternating it with precisely timed, mild electrical pulses delivered to the cheek or neck. Both are aimed at pushing the damaged nerve cells back to typical activity. In the trial, whose results were published in Science Translational Medicine on Jan. 3, 2018, participants using a sham treatment experienced no effect, but those who used the device daily for four weeks reported a decrease in tinnitus and an improved quality of life.

Patricia White, Ph.D. (2009, 2011), with Hearing Restoration Project member Albert Edge, Ph.D. White, a research associate professor at the University of Rochester Medical Center, Harvard Medical School 44

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professor Edge, and team have been able to regrow the sensory hair cells found in the mouse cochlea. The study, published in the European Journal of Neuroscience on Sep. 30, 2018, builds on White’s prior research that identified a family of receptors called epidermal growth factor (EGF) that is responsible for activating supporting cells in the auditory organs of birds. When triggered, these cells proliferate and foster the generation of new sensory hair cells. In mice, EGF receptors are expressed but do not drive regeneration of hair cells, so it could be that as mammals evolved, the signaling pathway was altered.

The new study aimed to unblock the regeneration of hair cells and also integrate them with nerve cells, so they are functional, by switching the EGF signaling pathway to act as it does in birds. The team focused on a specific receptor called ERBB2, found in supporting cells. They used a number of methods to activate the EGF signaling pathway: a virus targeting ERBB2 receptors; mice genetically altered to overexpress activated ERBB2; and two drugs developed to stimulate stem cell activity in the eye and pancreas that are already known to activate ERBB2 signaling. The researchers found that activating the ERBB2 pathway triggered a cascading series of cellular events: Supporting cells began to proliferate and started the process of activating other neighboring stem cells to lead to “apparent supernumerary hair cell formation,” and these hair cells’ integration with the network of neurons was also supported.

This was prepared using press materials from Massachusetts Eye and Ear; the University of Maryland; the University of Michigan; and the University of Rochester.

For references, hhf.org/winter2019-references.

Support our research: hhf.org/donate

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Creatively in Common

arts roundup

h e a ring health foundation

How hearing loss and other conditions affect, and are affected by, the arts.

Finding Inspiration “I had a cholesteatoma [abnormal skin growth] in my eardrum when I was born, and I had tons of ear infections, and I had to have [the cholesteatoma] removed…. There was so much scar tissue that it never healed. So I’ve always had a hole in my eardrum.

There were whole summers when I was growing up that I could never go in the water—I could have easily lost my hearing in my right ear. All of those things were very present for me as a child, feeling ashamed, not being able to go in the pool with the other kids…. So I felt like, oh here’s something I could really not act but just completely dwell in.” —Bradley Cooper, who directed and stars in the 2018 remake of “A Star Is Born,” on childhood hearing issues that helped him relate to his character’s tinnitus and hearing loss. Cooper’s audiologist has a cameo in the film.

“One of the songs that you see [my character] perform in ‘Creed II’ is called ‘Time Tick.’ It is about this idea of having a ticking clock, which has to do with her progressive hearing loss and some of the stuff she’s dealing with.” —Actress Tessa Thompson, who cowrote songs in both “Creed” and “Creed II” for her character, a musician.

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“A few years ago I started having hearing problems. Having a conversation in the street was very complicated. I had to concentrate on one voice and eliminate the rest of the sounds. This was like listening in slow motion, something blurred and imperfect. [For “The Sound of Silence” series] I use a neutral density filter, a slower exposure, and the intentional movement of the camera.” —Chilean artist Eduardo Asenjo Matus on his street photography that focuses on one subject amid a blurry swirl to reflect his experience of hearing.

“Classical guitars have soft nylon strings and produce warm tones. I strummed a few chords and noticed that my tinnitus and hyperacusis didn’t spike that much when I played this particular guitar. I was elated.”

—Mike Michel, a longtime recording and touring musician, on creating his acoustic album “On the Mend,” about coping with his hearing issues and lessons of resiliency and healing.

“[My dad] would say, ‘Are the violins in tune? Are those cymbals too loud?’ High-end stuff. Gradually, I learned you really have to focus on what the other person is trying to hear…. That’s probably why I can hear in frequencies now, why I can tell what 10 kilohertz is or 400 hertz

is, because I was very aware of that….

He was an amazing person to learn off. It was basically through his loss that I gained, in a terrible way, but he gained as well—because it meant he could carry on working.” —Giles Martin, son of late legendary Beatles producer Sir George Martin, on becoming his father’s ears when still a teen and joining the music industry.

“When I was young I liked to hear music blarin’/And I wasn’t carin’ to neuter my jams with earplugs/But these days I inhabitate a high-pitched ring over things/So these days I plug ’em up.” —Lyrics by musicians Kurt Vile and Courtney Barnett, whose song “Over Everything” describes tinnitus.

“I made the decision to give up being a music critic—my dream job—between songs at a Foo Fighters gig in 2011 [because] I had a terrible secret: My hearing was bad and getting worse.... I was eventually diagnosed with neurofibromatosis type 2, a rare disease that means my body likes to make tumors, especially near my ears…. So I’m telling my story in the only way that feels right—a musical.” —Tom Gockelen-Kozlowski, a 31-year-old writer, comedian, and former music critic, whose “Hearing Loss: The Musical” played at the 2018 Edinburgh Fringe Festival in Scotland.

arts roundup

“Apple is requesting the addition of emoji to better represent individuals with disabilities. Currently, emoji provide a wide range of options, but may not represent the experiences of those with disabilities.” —Apple, in its application submitted to the Unicode Consortium that oversees additions to emoji. Accessibility emoji proposed in March 2018 are expected to be part of Emoji 12.0 to be released in the first half of 2019.

Music Pros...

“I would go into the recording studio and the producer is saying, ‘You’re flat. You need to sing in key.’ And I’m saying, ‘No I’m not. I’m dead on. I don’t know what you’re talking about.’

And he’s going, ‘No, you’re flat!’ And I’m arguing with the producer about whether I’m flat or sharp or whatever.”

—Anthony Kovacs, Au.D., lead vocalist for a punk band, Shot Baker, on being inspired to become an audiologist.

Enjoying the Arts “The theatrical stages of New York City have long been a home to diverse ideas, characters, and backgrounds of the many cultures that make our city so great. To continue this celebration of diversity, we cannot forget about people with disabilities both on and off the stage.” —Victor Calise, the commissioner of the New York City Mayor’s Office for People With Disabilities, on installing captioning software in select stage theaters that uses voice recognition to provide real-time captioning and descriptions on audience members’ smartphones.

“When I sign rap music, I try to follow the beat with my body. I try to paint a picture with my hands.” —Rapper Sean Forbes, on D-PAN.tv, “the sign language channel,” which translates news, songs, and other media into sign language.

“When we’re listening to voices and speech, there’s a frequency trail we can follow, but it’s often buried under a din of noise. But if our brains have improved in tracking that anchor, we can better reconstruct the nuance of each speech fragment. So that’s the presumed mechanism for why this pitch training is so important.” —Frank Russo, Ph.D., a professor of psychology and director of the Science of Music, Auditory Research, and Technology (SMART) Lab at Ryerson University in Toronto. The lab is studying older adults who join a choir and do musical training for a 10-week period. Early findings show participants have significant improvements in speech-innoise perception, pitch discrimination, neural response to sound, and cognitive measures of attention.

...and Cons “Among young people aged 12–35 years in middle- and high-income countries, nearly 50 percent listen to unsafe levels of sound through personal audio devices (MP3 players, smartphones, and others), and around 40 percent are exposed to potentially damaging levels of sound at nightclubs, bars, and sporting events.”

—The World Health Organization, in a 2018 report that recommends reducing all exposure from leisure noise sources to 70 decibels, to avoid adverse health effects on sleep, cardiovascular health, birth outcomes, and overall well-being.

“Although I can still hear a little, one on one, and on the phone, I can’t hear music well enough to sing.”

—67-year-old ’80s music icon Huey Lewis, who canceled his 2018 tour after he was given a diagnosis of Ménière’s disease.

“Someone who says they have no [hearing] problems is a liar. This business is about power. That constant barrage of fire makes you numb to it. You don’t feel yourself getting hurt. First time you hear it, it’s so intense. The next time, even if it’s a little bit louder, it doesn’t feel as bad. You kind of start to compensate for what you don’t hear, and it gets worse.... [But] I don’t want anybody to feel sorry for me. I did it by choice. I gave my ears for rock and roll.” —David Uosikkinen, the drummer in the ’80s band The Hooters, on his hearing loss and tinnitus. Now 63, he says his hearing aids help with both conditions and that he continues to play drums.

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meet the researcher

hearing health foundation

EMERGING RESEARCH GRANTS

Meet the Researcher

Emerging Research Grants (ERG) As one of the only 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.

David Ehrlich, Ph.D.

New York University School of Medicine

Ehrlich received his doctorate in neuroscience from Emory University in Atlanta, and was a neuroscience research fellow at the Hospital for Sick Children in Toronto. He is a postdoctoral fellow in the department of otolaryngology–head and neck surgery and the Neuroscience Institute at the New York University School of Medicine. Ehrlich’s 2018 Emerging Research Grant was partially funded by the Meringoff Family Foundation in New York City.

In His Words loss of balance and consequent, harmful falls are common in aging populations and associated with various neurological disorders. Balance is sensed using vestibular organs in the inner ear and is processed in the brainstem, the first brain center for processing sensations of both hearing and balance. This project aims to uncover how the brain transforms sensations of instability into corrective movements to restore balance. my strategy is to leverage the relative simplicity of balance reflexes to define how brainstem cells represent information both individually and collectively. In order to measure balance responses in populations of cells located deep within the brain, I apply cutting-edge microscopy techniques to a transparent animal, the zebrafish. These fish must swim to restore balance when pushed away from the horizontal, providing a tractable model for balance control and brainstem function in general. when we look at fish from the side, they behave more like humans. Just as we tilt away from an upright stance in order to walk, dance, or play sports, fish tilt up and down to swim agilely. This insight makes fish a simple model to study how sensations of balance are integrated into the brain to perform stable yet effective movements. enamored of buildings and other human-made structures, as a young child I wanted to be an architect. I now like to think of myself as a student of the naturally intricate structures of the brainstem. I am also a great fan of playing percussion in a number of genres: jazz, rock, hip-hop. Some 50

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of my earliest inspiration for studying the brain came from a fascination with how music can change one’s mood. my younger brother max and I collaborated to design a board game. Players make up definitions for acronyms to impress their friends and family. Perhaps some inspiration came from the many acronyms used in research! We hope to eventually produce and distribute the game. eventually i hope to oversee a research laboratory as a professor of neuroscience. The work supported by my Emerging Research Grant is laying the technical and conceptual groundwork for studying how cells distributed throughout the zebrafish brain process sensations from the inner ear, eventually informing therapeutic strategies to treat balance deficits.

David Ehrlich, Ph.D.’s grant is partially supported by the Meringoff Family Foundation, a New York City–based organization whose mission is to improve the lives of local children through support of education, research, and public health.

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.

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For information on potential risks and contraindications relating to implantation, please visit www.medel.com/us/isi-cochlear-implant-systems/