Hearing Health Spring 2022

Hearing Health Spring 2022

A Publication of Hearing Health Foundation

The Life-Inspired Work Issue Clinicians and the community working to improve hearing

hhf.org

h e a ri n g h e alt h fo u ndation

Catch every word, every call You don’t want to miss a single detail. Trust CapTel® for accurate word-for-word captions of everything your caller says. With contactless delivery and one touch customer service, CapTel keeps you connected to the important people in your life, confident you’ll catch every word.

CapTel 2400i

www.CapTel.com 1-800-233-9130 FEDERAL LAW PROHIBITS ANYONE BUT REGISTERED USERS WITH HEARING LOSS FROM USING INTERNET PROTOCOL (IP) CAPTIONED TELEPHONES WITH THE CAPTIONS TURNED ON. IP Captioned Telephone Service may use a live operator. The operator generates captions of what the other party to the call says. These captions are then sent to your phone. There is a cost for each minute of captions generated, paid from a federally administered fund. No cost is passed on to the CapTel user for using the service. CapTel captioning service is intended exclusively for individuals with hearing loss. CapTel® is a registered trademark of Ultratec, Inc. The Bluetooth® word mark and logos are registered trademarks owned by Bluetooth SIG, Inc. and any use of such marks by Ultratec, Inc. is under license. (v2.6 10-19)

2

hearing health

hhf.org

The mission of Hearing Health Foundation (HHF) is to prevent and cure hearing loss and tinnitus through groundbreaking research and to promote hearing health.

HHF is the largest nonprofit funder of hearing and balance research in the U.S. and a leader in driving new innovations and treatments for people with hearing loss, tinnitus, and other hearing and balance conditions.

As part of our outreach, we provide this quarterly magazine for free to our vibrant community of readers and supporters, as well as to the dedicated professionals who work with them. Please subscribe at hhf.org/subscribe and make a donation at hhf.org/donate.

Spring 2022: The Life-Inspired Work Issue While living with a hearing condition can be challenging, it can also inspire your life’s calling, most notably helping others with similar issues.

Timothy Higdon President and CEO Hearing Health Foundation

a publication of hearing health foundation

spring 2022

3

Hearing Health The Life-Inspired Work Issue Spring 2022, Volume 38, Number 2

Publisher Timothy Higdon, President and CEO, HHF

Features

Editor Yishane

12 Workplace What Tinnitus Taught Me. Jan L. Mayes

28 Hearing Health A Wakeup Call.

Ben Manley

14 Workplace Notes From the Field and Clinic. Ronna Hertzano, M.D., Ph.D. A Direct Impact on Quality of Life. Julia Campbell, Au.D., Ph.D., CCC-A, FAAA. Role Models for the Research. Bryan K. Ward, M.D. Hearing and the Brain.

Samira Anderson, Au.D., Ph.D.

30 Living With Hearing Loss Let’s Remember No One Hears Perfectly. Pat Dobbs

18 Managing Hearing Loss 15 Tips for Choosing and Working With the Right Hearing Care Professional. Shari Eberts and Gael Hannan

32 Workplace How My Hearing Loss Inspired My Tech Career.

Brooke Wayne. From Reading Faces to Publishing Research.

Rachel Wayne, Ph.D., C.Psych.

38 Research Collaboration Remains Key. Lisa Goodrich, Ph.D. Like a Master Class in Consensus.

Mahashweta Basu, Ph.D.

22 Managing Hearing Loss Not Quite Business as Usual.

Stephen O. Frazier

41 Research Recent Research by Hearing Health Foundation Scientists, Explained.

26 Research Why I Appreciate My #StartWithERG. Regie Santos-Cortez, M.D., Ph.D.

46 Tinnitus A Numbers Game.

Hazel Goedhart

Departments

Sponsored

06 @editor 08 HHF News 50 Meet the Researcher Manoj Kumar, Ph.D. General Grand Chapter Royal Arch Masons International

48 Advertisement Tech Solutions.

49 Marketplace

Hearing Health Foundation (HHF) and Hearing Health magazine do not endorse any product or service shown as paid advertisements. While HHF makes every effort to publish accurate information, it is not responsible for the accuracy of information therein. See hhf.org/ad-policy.

Cover Jan L. Mayes on the west coast of Vancouver Island, Canada.

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

4

hearing health

hhf.org

Lee

Art Director Robin Senior Editor

Kidder

Amy Gross

Staff Writers Shari

Eberts, Kathi Mestayer

Advertising

hello@glmcommunications.com 212.929.1300 Editorial Committee

Judy R. Dubno, Ph.D. Christopher Geissler, Ph.D. Lisa Goodrich, Ph.D. Anil K. Lalwani, M.D. Rebecca M. Lewis, Au.D., Ph.D., CCC-A Joscelyn R.K. Martin, Au.D. Board of Directors

Chair: Col. John T. Dillard (U.S. Army, Ret.) Sophia Boccard Robert Boucai Judy R. Dubno, Ph.D. Jason Frank, J.D. Jay Grushkin, J.D. Roger M. Harris Elizabeth Keithley, Ph.D. Cary Kopczynski Sharon Kujawa, Ph.D. Anil K. Lalwani, M.D. Michael C. Nolan Paul E. Orlin Robert V. Shannon, Ph.D. Nancy Young, M.D. Hearing Health Foundation 575 Eighth Avenue #1201, New York, NY 10018 Phone: 212.257.6140 TTY: 888.435.6104 Email: info@hhf.org Web: hhf.org Hearing Health Foundation is a tax-exempt, charitable organization and is eligible to receive tax-deductible contributions under the IRS Code 501(c)(3). Federal Tax ID: 13-1882107 Hearing Health magazine (ISSN 2691-9044, print; ISSN 2691-9052, online) is published four times annually by Hearing Health Foundation.

Copyright 2022, 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.

"When I first discovered the InnoCaption app, I was blown away by its potential to completely change my life and the lives of many other deaf and hard of hearing individuals."

Joe Duarte

Who We Are InnoCaption is owned and led by two Co-CEOs whose partnership and collaboration led to the launch of the first mobile-focused real-time call captioning service. We are a passionate, purpose-driven team on a mission to provide an empowering accessibility solution for the deaf and hard of hearing community.

The InnoCaption Difference Our mission and mindset make our service unique. We focus solely on smartphone technology while our industry mainly offers landline phone solutions. We utilize live stenographers (CART) to provide faster and more accurate captioning despite the higher cost it entails. We are the only captioned phone service provider to offer users the choice between automated speech recognition technology or live assisted captioning on every call. All because we care about our users and put their needs first.

Hearing Healthcare Professionals Download our app and register for a demo account if you would like to test our service before recommending it to patients.

If you have any questions regarding our service or require assistance, please contact us at healthcare@innocaption.com.

Disclaimer: InnoCaption is ONLY available in the United States. FEDERAL LAW PROHIBITS ANYONE BUT REGISTERED USERS WITH HEARING LOSS FROM USING INTERNET PROTOCOL (IP) CAPTIONED TELEPHONES WITH THE CAPTIONS TURNED ON. IP captioned telephone service may use a live operator. The operator generates captions of what the other party to the call says. These captions are then sent to your phone. There is a cost for each minute of captions generated, paid from a federally administered fund. No cost is passed along to the InnoCaption User for using the service. *911 Calling Advisory: Calling 911 from a landline remains the most reliable method of reaching emergency response personnel.

letters to the editor

hearing health foundatio n

dear editor: Enclosed is a TBB donor pin from the Deafness Research Foundation days. It belonged to my cousin, Helen (Judy) V. Sharp, who was born with hearing issues. She passed away a number of years ago.

I am certain Judy would want the Foundation to have this pin from a personal as well as a sentimental family perspective. Her first cousin, Monte Jacoby, served as president of the Deafness Research Foundation in the 1980s and 1990s.

@editor

Karen Jacoby Sinunu New Jersey from the editor: Thank you for making the effort to find the Deafness Research Foundation (DRF), now Hearing Health Foundation. It’s lovely to have this piece of history.

TBB refers to “temporal bone bank.” The temporal bones form the sides and base of the skull, surrounding the ear canals. DRF founder Collette Ramsey Baker helped establish a national temporal bone bank. In partnership with the American Academy of Otolaryngology– Head and Neck Surgery, in 1960 DRF established the National Temporal Bone Banks Program (NTBB) to encourage individuals with ear disorders to donate their temporal bones at death toward research at one of four regional centers. Nearly 6,000 individuals registered as donors over the years. The NTBB later became the National Temporal Bone Hearing and Balance Pathology Resource Registry, and since 1992 has been a part of the National Institute on Deafness and Other Communication Disorders.

See masseyeandear.org/tbregistry to learn more.

dear editor: Thank you so much for taping the “Chronic Ear Infections and Related Hearing Loss” webinar with Regie Santos-Cortez, M.D., Ph.D., as I was unable to hear/see the original presentation.

As a teacher of the deaf and hard of hearing and a speech pathologist I was pleased that she

covered the effects a hearing loss has on a child’s academics as well as their early language acquisition.

Further, as one who has had otitis media (ear infections) and hearing loss since infancy, I was pleased to know of the research today.

Mary Via email from the editor: Captioned recordings and transcripts, and bibliographies of our webinars are at hhf.org/webinar. For more from Regie Santos-Cortez, M.D., Ph.D., see page 26.

dear editor: As a person who is now 95 percent deaf without my hearing aids, I have found you and the Hearing Loss Association of America (HLAA) to be the most reliable sources for information about hearing health, hearing loss, and technology to assist those of us with hearing loss. I have shared your information with members of our hearing loss support group at our local Concord, Mass., council on aging and have encouraged them to subscribe to HHF’s magazine.

As a professor emeritus in criminal justice and a 30-year teacher of meditation, I have experienced over the past 40 years much cultural resistance to change. The acceptance of hearing loss and the implementation of hearing aids, cochlear implants, and assistive listening devices is the biggest challenge I have experienced because it is such an unconscious cultural resistance. The work of HHF and the HLAA’s state affiliates has been an enormous resource in this educational public relations challenge. Please keep up your excellent work.

Ed LeClair via email

We always appreciate hearing from our community. Letters may be edited for length and clarity. Please email us at editor@hhf.org.

Support our research: hhf.org/donate.

6

hearing health

hhf.org

Debra–U.S. Air Force

Marvin–U.S. Army

Robert-U.S. Army

Kevin-U.S. Army

Robert-U.S. Army

Heather–U.S. Navy

Everybody’s health tells a story.

What’s yours?

Why should I join?

You may help researchers to: • Understand how genes, lifestyle, and environment influence health and well-being • Make new discoveries to advance health research for Veterans and for all of us You might learn about: • Your genetic ancestry (where your family comes from) • Your genetic traits, such as why you might love or hate cilantro • Whether you may have an increased risk of developing a serious health condition, such as cancer or heart disease • How your body might react to certain medicines

To learn more: Veterans.JoinAllofUs.org (833) 805-0426 allofus@va.gov

How do I join?

1

Visit VA.JoinAllofUs.org (if you don’t see a VA logo on this page, re-type the address)

2

Register using an email or cell phone number (you will need to have one of these readily available to verify your account)

3

Once you sign the Primary Consent form, click “Find a Partner” and select the VA closest to you

4

Review and sign the optional electronic health record (EHR) consent

5

Complete the Consent to Get DNA Results

6

Complete surveys found under “Program Opportunities”

7

Call the VA All of Us Information Center at (833) 805-0426 to set up an appointment for your physical measurements and blood draw, or for help

All of Us and the All of Us logo are service marks of the U.S. Department of Health and Human Services.

NEWS

HHF

New board members Nancy Young, M.D. (above), and Sharon Kujawa, Ph.D.

HHF Welcomes Two New Board Members...

Two new members joined Hearing Health Foundation’s Board of Directors this spring, bringing specific insights on hearing loss from excess noise and cochlear implantation.

Sharon Kujawa, Ph.D., is a professor of otolaryngology–head and neck surgery at Harvard Medical School; a principal investigator at EatonPeabody Laboratories, Mass Eye and Ear; and director of audiology research and the Sheldon and Dorothea Buckler Chair in Otolaryngology–Head and Neck Surgery at Mass Eye and Ear. She received her doctorate from the University of Arizona, where she was later named Distinguished Alumnus in Speech and Hearing. The American Academy of Audiology, where she served two terms on the executive board and received the 2010 Distinguished Achievement Award, describes her as “one of the field’s most active and accomplished audiologists and scientists.”

Dr. Kujawa received a 1999 Emerging Research Grant (ERG) for a project titled “Ménière’s Disease: 8

hearing health

hhf.org

Monitoring Pharmacologic Manipulations,” and since 2013 she has been a member of HHF’s Council of Scientific Trustees, the scientific advisory body that oversees the ERG program. Her research focuses on primary causes of hearing loss like noise exposure and aging, aiming to reveal the underlying cellular damage and its consequences to hearing function.

In recent years, this work has given rise to the concept of “hidden hearing loss”—declines in hearing function that are not revealed by the threshold audiogram, but are well known to those who experience them. (Dr. Kujawa will be presenting on this topic for our April 25 webinar, which will be recorded and available at hhf.org/webinar.)

Nancy Young, M.D., is the Lillian S. Well Professor of Pediatric Otolaryngology and a fellow of the Knowles Hearing Center of Northwestern University, and the medical director of the Cochlear Implant Program, which she founded in 1991, at the Ann & Robert H. Lurie Children’s Hospital in

hhf news

Chicago, where she is also the head of otolaryngology and the medical director of audiology.

A graduate of New York University Medical School, Dr. Young’s primary academic focus is pediatric cochlear implantation, and she is currently investigating the prediction of cochlear implant outcomes based upon preoperative brain structure and function. In addition to a special interest in the implantation of children with multiple disabilities and complex surgical anatomy, Dr. Young also has a special interest in auditory neuropathy spectrum disorder and cochlear nerve deficiency.

“I am very pleased to welcome Sharon and Nancy to our board,” says Timothy Higdon, HHF’s president and CEO. “Each will bring a wealth of knowledge and experience to our organization, and be incredibly valuable assets as we further our commitment to scientific research and prevention. We look forward to their perspectives and contributions to all facets of HHF.”

photo credit (eatock): university of chicago

...And Sincerely Thanks a Board Member Stepping Down HHF is truly grateful for the service of Ruth Anne Eatock, Ph.D., a professor of neurobiology and the dean for faculty affairs at the University of Chicago, who has served on HHF’s Board of Directors since April 2017 and is Ruth Anne Eatock, Ph.D. stepping down as of April 2022.

“Ruth Anne brought her otolaryngological expertise to HHF, providing us with wisdom and sound judgment where it was needed to help us govern the efforts of our flagship programs— the Emerging Research Grants and the Hearing Restoration Project,” says board chair Col. John Dillard (U.S. Army, Ret.). “Her calm demeanor and strong insightful views helped to guide HHF’s efforts and keep our board members and researchers aligned toward our common goal of preventing and curing hearing loss.”

HHF board chair emerita Betsy Keithley, Ph.D., appreciates the focus Dr. Eatock brought to the Emerging Research Grants (ERG) program. “We saw that Ruth Anne consistently championed the

ERG program because, as is true with all of HHF, she recognizes that these young, early career researchers are the stars of the future who will have the ideas and experience to tackle the many different causes of hearing loss.”

Timothy Higdon, HHF president and CEO, expresses thanks for Dr. Eatock’s insights into not only specific research areas but also the nitty-gritty of program administration. “She has been an advocate for the importance of considering the vestibular system, both as a research focus and as an avenue for improving our understanding of the hearing system, which is closely related and very similar to the vestibular system,” he says.

“And we saw she was willing to dive into the details,” Higdon adds, “including working with HHF staff on optimizing making the online call for ERG applications easier to find based on potential applicants’ particular research interests.”

All of us at HHF—the board, scientific advisers, and staff—sincerely thank Dr. Eatock for lending her time and expertise to our mission to prevent, research, and cure hearing loss, tinnitus, and related hearing and balance conditions.

a publication of hearing health foundation

spring 2022

9

hhf news

h e ar i n g h ealth foundation

New Video Launched to Mark World Hearing Day As part of HHF’s Keep Listening campaign, the new video helps amplify our effort to create a major culture shift in how people think about hearing health and hearing protection.

HHF released a new, 60-second video on World Hearing Day, a World Health Organization awareness day that each year falls on March 3. The motion graphics video, titled “Listen Up People,” was created by filmmaker Ben Radatz, a noted visual effects creator who has several movie title sequences to his credit, including for the James Bond film “Quantum of Solace.” Radatz, who is based in Los Angeles, worked closely with HHF’s Keep Listening team of Sandy Alouete, Timea Dancs, Helen Garrett, and Rob Grobengieser.

The short-form video anchored HHF’s World Hearing Day outreach and gained notable celebrity and musician attention, with social media shoutouts from Yoko Ono, Tom Morello (Rage Against the Machine), Jeff Ament (Pearl Jam), Kathy Valentine and Gina Schock (The Go-Go’s), Darryl McDaniels (Run-DMC), KT Tunstall, Lyle Preslar (Minor Threat), Melissa Etheridge, John McLaughlin, and Nandi Bushell. Collectively and even individually these artists have millions of followers on social media.

As part of HHF’s Keep Listening campaign, the new video helps amplify our effort to create a major culture shift in how people think about hearing health and hearing protection. “Listen Up People” complements the short-form “Grenades” video created by Chicago agency The Escape Pod, and our realpeople videos by L.A. multimedia production company PICROW. All continue to generate interest as public service announcements on broadcast TV. Keep Listening is sounding the alarm about the risk of hearing loss and tinnitus from excess noise exposure. In the same way we now know of the cancer risks from secondhand smoke or too much sun, HHF wants people of all ages to be aware of the dangers of listening too loud and too long, and to take steps to protect the hearing you have, for life. Keep Listening’s message is that simple habit changes can lead to lasting, positive health effects: Be aware of your daily noise exposure; carry and wear earplugs for loud environments; take listening breaks to rest your ears; and advocate for quieter shared spaces. To learn more and watch the videos, please visit hhf.org/keeplistening.

Jeff Ament of Pearl Jam recorded a video for World Hearing Day in a post that tagged HHF and earned nearly 18,000 views.

Opposite page: Stills from the video “Listen Up People.”

10

hearing health

hhf.org

hhf news

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

spring 2022

11

workplace

life

h ear i n g health foundation

in

spired

What Tinnitus Taught Me

w

Experiencing constant ringing in the ears as a young adult informed a future career as an audiologist—and empathy for patients. By Jan L. Mayes Jan L. Mayes wore these cat ears to an anime convention.

“They had little bells that tinkled, which I thought was funny what with my tinnitus,” she says.

12

hearing health

I wouldn’t be an audiologist if tinnitus hadn’t arrived in my life when I was 20-something. My tinnitus started in the 1980s after a car crash that caused severe whiplash and a concussion. I’ll always remember when the doctor said the tinnitus was a total coincidence, and had nothing to do with the accident. I remember being told, “Nothing could be done.” I refused to believe it. I switched my major from speech language pathology to audiology.

I’ve had decreased sound tolerance including pain, hate, and fear of certain sounds since childhood. I never told anyone, because it seemed crazy to be bothered by sounds that didn’t affect others. Years after I became an audiologist, there were finally scientific definitions for hyperacusis, misophonia, and phonophobia. Hyperacusis is pain sensitivity to everyday sounds. Misophonia is when certain sounds trigger dislike or hate. And phonophobia is a fear of specific sounds, especially those that would trigger hyperacusis. The decreased sound tolerance is only for certain sounds that wouldn’t affect people with typical hearing.

By the time I graduated, I already had a lot in common with my patients who had tinnitus.

For example, loud tests hurt, and my hearing was “hard to test” because I couldn’t distinguish my tinnitus from hearing test tones. So I adapted testing for my patients to make it easier. I also could reassure them about common tinnitus features, like flaring up after hearing testing or the tinnitus changing with different jaw, head, or body positions.

I had empathy for my patients with tinnitus distress, because my tinnitus led to insomnia, anxiety, and depression. Like most, I was my own guinea pig. I tried almost anything to lower distress, including acupuncture or naturopathic medicine which my fellow audiologists would not recommend. At times my professionalism slipped, when a patient and I debated who had “tried everything.” I had to accept I had a chronic condition that was going to flare up every now and then from stress or other reasons.

Cognitive behavioral therapy-type distraction and relaxation techniques that helped me cope with chronic pain also helped me manage life with tinnitus. When sound therapy treatments became available, like many of my patients I thought at first, “I hear enough noise, thank you very much.” But I couldn’t talk the talk without walking the walk. When I discussed sound enrichment or mental wellness options with my patients, these tools were already in my coping toolbox.

hhf.org

ork

workplace

By the time I graduated, I already had a lot in common with my patients who had tinnitus. For example, loud tests hurt, and my hearing was “hard to test” because I couldn’t distinguish my tinnitus from hearing test tones. So I adapted testing for my patients to make it easier. I also could reassure them about common tinnitus features, like flaring up after hearing testing or the tinnitus changing with different jaw, head, or body positions.

Now I use an assortment of tools or techniques. In general, I try to eat healthy and exercise most days including yoga, gardening, and walking my dogs. If I’m in a quiet daytime environment, I listen to music or TV, adding in something more distracting if needed, like playing Wordle or working on my latest crochet project.

For personal listening sound enrichment, I prefer earbuds with my phone or tablet set to a low comfortable volume. I like soft “wind”-type sounds while sleeping. I use relaxation techniques when needed like progressive muscle relaxation or the Breathe2Relax app. My next step is ear-level combination devices with therapeutic sounds and some amplification for daytime use. I always use earplugs at concerts. When I have tinnitus flareups, I know what helps me so they aren’t as bad and they don’t last as long as in the past.

This made me a patient-centered clinician early on. I know there is no cookie-cutter approach, since tinnitus and hyperacusis management depend on each individual’s distress level, hearing status, needs, wants, and preferences. I always asked what patients had already tried, including what helped or not. If needed, we discussed pros and cons of additional options so people could make informed decisions. What works for one person might not help somebody else, but there are still many choices available, from free, safe, self-help options to proven treatment approaches like Progressive Tinnitus Management.

Clinically, I tried to share what I wished I had been told about tinnitus when I was diagnosed. The bottom line is, something can be done. Even if there’s no cure yet, you have to keep trying. Tinnitus and hyperacusis can be effectively managed; it just might take a while to customize how you cope.

Jan L. Mayes is a science reporter for The Quiet Coalition, a program of the Boston-based Quiet Communities Inc. A retired audiologist with a master’s degree in audiology, the Vancouver resident is also an award-winning author with special interests in noise, tinnitus, and hyperacusis. For references, see hhf.org/spring2022-references.

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

spring 2022

13

workplace

h ear i n g health foundation

Notes From the Field and Clinic Physician-scientists bring multiple perspectives to treating patients and conducting research.

By Ronna Hertzano, M.D., Ph.D.

Training in the gEAR—a tool that provides intuitive visualization, analysis, and sharing of gene expression data—occurred at the last in-person Association for Research in Otolaryngology MidWinter Meeting, in early 2020.

I am an otolaryngologist surgeon-scientist. My clinical practice focuses on the diagnosis and treatment of diseases of the ear, with an emphasis on hearing restoration. As such, I see and treat patients of all ages who suffer from hereditary and nonhereditary auditory (hearing) and vestibular (balance) dysfunction.

Over 60 percent of my time is dedicated to research, where my goal is to make significant contributions toward the treatment of congenital and acquired auditory and vestibular dysfunction.

Toward hearing restoration, I work to unravel the regulatory signaling cascades that lead to the proper development of the ear, specifically sensory hair cells in the inner ear.

I lead a collaborative team that develops and applies a variety of approaches for cell type-specific, multi-omic analyses of the ear. We couple the results of these studies with state-ofthe-art informatics analyses to identify key regulators of gene expression in hair cell development, and cell type-specific signaling cascades in acquired hearing loss (e.g., from excess noise or aging).

Several years ago, I realized that the lack of intuitive tools for the noninformatics–trained biologists for visualization and analysis of omics data presents a major barrier to the effective dissemination, sharing, and analysis of expression data by cellular and molecular biologists.

This led to the inception and development of the gEAR (gene Expression for Analysis Resource), a tool that provides intuitive visualization, analysis, and sharing of gene expression data. Hearing Health Foundation (HHF)’s Hearing Restoration Project helped provide seed funding for the platform.

The gEAR portal allows anybody in the scientific community who is studying noise-induced hearing loss seamless access to our dataset without having to download the data and format it. They can also analyze the data using the gEAR.

Two Ways of Thinking

I believe all physician-scientists (also called clinician-researchers) share the dream of helping to advance how we treat human diseases. We also share the path—which includes active listening to patients, creative thinking, lab meeting discussions, forming collaborations, and staying at the forefront of research.

Ideally we’ll be able to develop experiments in model organisms followed up by clinical studies among the patient population.

14

hearing health

hhf.org

workplace

Only 40 to 50 percent of people with congenital hearing loss have an identifiable mutation. At my institution, the University of Maryland School of Medicine, we have a protocol where we are able to draw blood from patients and, for research, have it genetically tested. This research is in collaboration with two of my basic science genetics colleagues. As a result, we can perform exome sequencing on patients with hearing loss, and this will allow us to potentially identify new deafness genes.

I believe that having a research background allows me to listen to patient concerns differently and constantly ask myself mechanistic research questions.

Often the issues overlap or coincide, and by looking at things from the physician’s and scientist’s perspectives I’m able to gain context for the variety of ear diseases in my patients. For example, we are studying sex differences in hearing and susceptibility to noise-induced hearing loss. This has made us interested in the estrogen signaling pathway in hearing.

The Latest Findings

Another important aspect of being a physician-scientist is the ability to critically review the literature and follow the most recent findings reported at conferences. This helps me identify opportunities for patients who may benefit from clinical trials.

For example, at a recent Association for Research in Otolaryngology MidWinter Meeting, which is the top research conference for hearing and balance scientists, I saw a presentation by Lisa Cunningham, Ph.D., of the National Institute on Deafness and Other Communication Disorders, about a possible treatment to prevent hearing loss as a side effect in head and neck cancer patients treated with the common chemotherapy drug cisplatin.

Because I was at the meeting, and also a hearing restoration surgeonscientist interested in offering opportunities to our patients, I was able to reach out to the presenter as well as head and neck doctors and oncologists at my institution. We are working on facilitating a collaboration that will hopefully lead to being able to include our patients as part of a prospective clinical study.

The dual approach of being a physician-scientist makes for a very fulfilling experience and leads to advancements in patient care as a field. It allows us to answer patient questions in a thoughtful and educated manner because of a very broad exposure to data, and experiencing firsthand the patient’s concerns brings a human dimension to our research.

A 2009–2010 Emerging Research Grants (ERG) scientist and a member of HHF’s Hearing Restoration Project (HRP), Ronna Hertzano, M.D., Ph.D., is a professor in the department of otorhinolaryngology–head & neck surgery at the University of Maryland School of Medicine. For more about the gEAR, see page 41. Hertzano and HRP scientific director Lisa Goodrich, Ph.D., presented the HRP’s research as part HHF’s Hearing Health Hour webinar series. View captioned recordings at hhf.org/webinar.

I believe all physician-scientists (also called clinicianresearchers) share the dream of helping to advance how we treat human diseases.

We also share the path—which includes active listening to patients, creative thinking, lab meeting discussions, forming collaborations, and staying at the forefront of research.

Ideally we’ll be able to develop experiments in model organisms followed up by clinical studies among the patient population.

a publication of hearing health foundation

spring 2022

15

workplace

h ear i n g health foundation

A Direct Impact on Quality of Life

By Julia Campbell, Au.D., Ph.D., CCC-A, FAAA

The Central Sensory Processes Laboratory at University of Texas at Austin investigates the causes of central auditory deficits.

It’s not about the grants or the papers.

It’s about learning how to help people and improve their quality of life through the right kinds of scientific questions, leading to scientific breakthroughs.

My favorite thing to tell my students is that the best research questions come from the clinic.

This is where we can have a direct impact on others’ quality of life. For instance, at a recent conference I asked attending clinicians whether they had been seeing an increase in patients with typical hearing but concurrent auditory disorders. Every single person raised their hand to indicate that, indeed, they were testing patients who scored within the “normal” range on typical clinical measures but who still reported significant auditory dysfunction, such as tinnitus (ringing in the ears), misophonia (adverse emotional reactions to certain sounds), and difficulty understanding speech in the presence of background noise.

I have also personally interacted with patients who fall into the previous categories. One such individual was suffering from severe tinnitus but was told by a physician, “There’s nothing we can do.” Not only are the usual diagnostic measures insensitive to the reported auditory dysfunction, but there are few to no effective interventions available for these populations. Seeing the frustration of patients and clinicians alike has motivated our lab, the Central Sensory Processes Laboratory at the University of Texas at Austin, to investigate the underlying causes of central auditory deficits that occur despite the indication of “normal” hearing. Once these causes are better understood, we can progress to effective treatments that target the site of dysfunction, alleviating the symptom.

My father had a repeat cholesteatoma (a cyst in the ear), and a viral infection of the vestibular nerve, so he has a middle ear prosthetic as an ossicle replacement. I provided insights into the science while he shared the personal aspect of what patients go through. Speaking with individuals suffering from tinnitus and/or hearing loss, as well as those with various neurological disorders, reminds one of the importance of research.

It’s not about the grants or the papers. It’s about learning how to help people and improve their quality of life through the right kinds of scientific questions, leading to scientific breakthroughs. By listening to our patients and clinicians, we will be able to better help underserved populations that may otherwise experience something akin to indifference by the medical community.

Support our research: hhf.org/donate.

16

hearing health

hhf.org

A 2016 ERG scientist generously funded by the Les Paul Foundation, Julia Campbell, Au.D., Ph.D, CCC-A, FAAA, is an assistant professor in the department of speech, language, and hearing sciences at the University of Texas at Austin, where she is also the director of the Central Sensory Processes Laboratory.

workplace

Role Models for the Research

By Bryan K. Ward, M.D. I was the first in my family to graduate from a fouryear college and was inspired to enter medicine by our pediatrician. He was a comfort to all of us and a great role model of a family physician, helping my sister who had multiple serious health issues during my childhood. At birth she experienced an intraventricular hemorrhage and from a young age had bilateral sensorineural hearing loss.

Since receiving HHF funding, I have taken a great interest in Ménière’s disease (a hearing and balance disorder) and several projects have emerged from this grant. Some are real discoveries in the pathophysiology of Ménière’s disease, which is exciting. I learned from watching my sister struggle with imbalance and falls that balance is just as important as hearing and often significantly underappreciated.

Being a clinician provides motivation for the research.

Every week in my clinic I see patients with Ménière’s disease and other disorders of the inner ear vestibular

Bryan K. Ward, M.D. (center) with colleagues Jacob Pogson, Ph.D. (left), and Dale Roberts.

system that are not well understood. I have also discovered that patients with Ménière’s disease are excited to participate in research. They understand that despite our knowing about this condition for over 150 years, we have few answers for them, and they want to help us find answers.

A 2020 ERG scientist, Bryan K. Ward, M.D., is an assistant professor of otolaryngology– head and neck surgery at Johns Hopkins University School of Medicine.

Hearing and the Brain As a clinical audiologist for 26 years, I enjoyed helping people improve the quality of their lives through better hearing with the use of hearing aids. At the same time, I also felt frustrated when my patients continued to have trouble hearing in challenging listening situations, such as in noisy backgrounds, even with hearing aids with advanced technology.

What has been especially puzzling is that two people with identical hearing tests may report quite different listening experiences in the same environments while wearing the same hearing aid technology. These observations led me to question what happens to speech after it has been processed by hearing aids, and whether the brain’s processing of speech is degraded in some individuals, especially as they age.

For these reasons, I left my clinical practice in Minnesota to pursue a Ph.D. at Northwestern University in Illinois. I worked toward my doctorate at Northwestern’s Auditory Neuroscience Laboratory (now called Brainvolts), which is overseen by Nina Kraus, Ph.D. While there, my focus was on examining how the brain processes sound in

By Samira Anderson, Au.D., Ph.D.

individuals who have difficulty understanding speech in noise, such as older adults or people who have hearing loss.

This is research that I continue today, examining how hearing loss alters the way our brains respond to speech and how it may affect cognitive functions, such as working memory, and how hearing aid amplification can reverse these changes.

A 2014 ERG scientist generously funded by the General Grand Chapter Royal Arch Masons International, Samira Anderson, Au.D., Ph.D., is an associate professor in the department of hearing and speech sciences at the University of Maryland, where she also oversees the Hearing Brain Lab. She presented her research as part HHF’s Hearing Health Hour webinar series, at hhf.org/webinar. a publication of hearing health foundation

spring 2022

17

managing hearing loss

life

hearing health foundat i o n

in

spired w

15 Tips for Choosing and Working With the Right Hearing Care Professional

An excerpt from the book “Hear & Beyond”

By Shari Eberts and Gael Hannan

18

hearing health

hhf.org

When Shari began having trouble hearing, she was not an expert on communication best practices. She thought that her audiologist would share a broad range of information with her, including things like accessibility options for watching TV or attending movies or the theater. But her first hearing care professional (HCP) focused the conversation solely on devices. What type of hearing aid did she want, and what was her budget?

An audiologist with a different approach could have eased Shari’s transition to living with hearing loss and saved a lot of frustration and sadness. Today, Shari seeks out HCPs who extend their focus beyond the technical aspects of audiograms and hearing aid fittings to the emotional aspects of hearing loss, ones who take the time to understand Shari’s specific communication needs and plan her treatment to include new technologies.

Gael’s current audiologists have more influence on her peace of mind and quality of life than anyone who is not a husband, child, or important friend. She sees her hearing professional more frequently than she sees her family doctor, because her hearing loss requires more attention and poses more barriers than any other health challenge. Her audiologist is a trusted advisor on her key technical supports, her hearing aid, and her cochlear implant.

But, like Shari, that wasn’t always the case. One long-ago HCP stopped Gael mid-hearing test and said, “I don’t think you’re trying hard enough.”

Others were dismissive of strategies outside the realm of the hearing aid.

On the rare occasion when, in talking about her hearing loss, Gael cried, the practitioners waited for her to calm herself and then went on without addressing the raw emotion that was happening right there, in their office—a missed opportunity to provide much-needed support and advice. In another memorable appointment, Gael started to cry as she talked about her new and devastating tinnitus, and the recently graduated audiologist started to cry too.

Gael ended up soothing her.

ork

managing hearing loss

Now Gael has a hand-picked team of professionals who provide solid, helpful services. They also remind her that she may not know as much as she thinks she does about hearing loss—they are still the experts on many aspects. And she reminds them to respect the wisdom of the real-life experience she brings to the professional-client relationship.

The ideal HCP practices person-centered care. This means they work to understand your individual communication challenges and partner with you to solve them. They ask important questions and listen to your answers. They show empathy for your struggles. Your input, along with their expertise, is crucial in finding solutions that work best for you.

A successful relationship must be based on mutual trust and a united focus on creating better communication outcomes. This requires establishing a working relationship with clearly defined goals and a plan of action. This is a win for everyone—you and your HCP. The best HCPs are true communication specialists, creating solutions that include hearing aids as well as assistive listening devices and even direct-to-consumer devices or apps.

When you first meet, your HCP must learn who you are before they can help you. You are a unique individual with hearing difficulties and priorities, and are likely using a homegrown mix of communication skills and technical knowledge. Your personality, emotional background, and life situations dictate your response to hearing loss.

Whether you’re new to hearing loss or have been using hearing aids for years, you have choices and input into decisions involving your aural (or auditory) rehabilitation, a fancy term for learning how to communicate and live better with hearing loss. At every meeting with your HCP, there should be a two-way conversation, an exchange of information. At appropriate times, you’ll

SG

T N

L IA

The HCPs are Thebest best hearing care communication specialists who professionals are communication create personalized specialists whosolutions create that include both technology personalized solutions that and non-technical strategies. and include both technology

O C

F N

E ID

nontechnical strategies.

a publication of hearing health foundation

spring 2022

19

managing hearing loss

hearing health foundat i o n

A successful relationship must be based on mutual trust and a united focus on creating better communication outcomes. This requires establishing a working relationship with clearly defined goals and a plan of action. This is a win for everyone—you and your hearing care professional.

discuss different communication strategies, including assistive technology. At no point should you be told what to do or when to do it, nor that this-hearing-aid-here is the best and only option for you.

You and your HCP need to be a good fit. Consider the following factors in your search: 1

2

3

4

20

Personality. Because you will work closely with this professional, you must feel comfortable with them.

They should be honest, set realistic expectations, and speak plainly without overusing jargon so you can understand. Be certain, though, to differentiate between resistance to your hearing loss and resistance to the HCP. Good communication skills. If there’s one person you should be able to understand, it’s your hearing care professional! Surprisingly, some HCPs don’t use best practice communication skills like speaking with sufficient volume while facing you, which can cause extra stress. Alert your HCP if you are not understanding them well, and if the problem persists consider working with someone else.

Listening ability. The best communication skill an HCP can possess is the ability to actively listen to you, to not only hear what you articulate but to pick up on what you convey through emotion and actions. To listen well, the professional needs to know which questions will elicit the information they need to best treat you.

Location and hours of operation. Where possible, choose an HCP with a convenient office location and flexible hours. Once you are settled in with your hearing devices, you may not be visiting as often, but if a problem arises, you will want quick access.

hearing health

hhf.org

5

6

7

Robust product offerings. An HCP should not promote just one brand of hearing aid. Most hearing aid brands offer excellent products, each with unique sound quality and programming features; therefore, one brand will not work for every client. Choose an HCP who offers a variety of options so you can work together to find the most suitable product.

Ethical business practices. Reputable HCPs will let you try a new pair of hearing aids or other devices for at least 30 days—60 days is even better.

(In many jurisdictions, a sufficient trial period is standard practice required by the industry’s governing body.) They will not press you to buy something you cannot afford and may even offer financing solutions. If your professional doesn’t meet these basic conditions, find someone else.

Qualifications. Expect training and professionalism. Only commit to the care of an HCP who has the appropriate credentials for your country. Audiologists typically hold a master’s degree or doctorate, while hearing instrument specialists should be graduates of a two- to-threeyear focused training program.

How to Support the Partnership

Hearing health professionals cannot perform miracles. You must actively participate in the process. Be cooperative, open-minded, and honest with your HCP. The more you contribute—and the more questions you ask—the better the outcomes will be.

On the following page please see our additional tips for how to support this important partnership.

managing hearing loss

Hearing health professionals cannot perform miracles.

You must actively participate in the process. Be cooperative, open-minded, and honest with your hearing care professional. The more you contribute— and the more questions you ask—the better the outcomes will be.

8

9

10

11

12

13

14

Share your hearing loss story and struggles.

This is not the time to play tough guy. The more you reveal about your personal challenges, the more information your HCP will have when planning possible solutions.

Come armed with facts. Keep detailed notes about how you are hearing in a variety of situations with your hearing aids so you can assist your HCP with any necessary fine-tuning. The more specific data you can provide—the location, time of day, communication partner, decibel level, and so on—the better.

Leave anger at home. Hearing loss is frustrating, and although hearing aids help a lot, they are not perfect solutions. Try to maintain an analytical attitude toward your communication issues. Anger won’t solve problems and may prevent you from finding a creative solution.

Properly maintain hearing devices. Keeping your aids in top condition will prolong their lifespan and help you hear your best.

Respect your HCP’s expertise. Although you know the most about your experiences and communication desires, HCPs use time-tested diagnostic tools and programming methods.

Blending the two areas of expertise is the best way to find a dynamic solution.

Honor the journey. Your relationship with your hearing loss and your HCP may change over time as you accept your hearing difficulties and learn the types of assistance that you need. Be open to sharing new insights and attitudes along the way.

Teach what you know. When you discover new tricks or useful apps that make hearing easier for you in a certain situation, share them with your

HCP, who can then spread the word to other clients.

Similarly, you can benefit from the experience of other clients.

15 And finally, stay in touch. Regular hearing aid checkups are a good time to inquire about new assistive technology—and to let your HCP know of any changes to your hearing situation. Regular visits allow you to keep tabs on your hearing loss, keep your devices fresh, and stay current on new developments.

This is excerpted from “Hear & Beyond,” by Shari Eberts (far left) and Gael Hannan, published in May 2022 and available online and in bookstores. Staff writer Shari Eberts serves on the National Board of the Hearing Loss Association of America and is a past chair of HHF’s Board of Directors. Humorist, author, and speaker Gael Hannan writes regularly for the website Hearing Health & Technology Matters.

Share your story: Tell us about your experience with hearing healthcare at editor@hhf.org.

Support our research: hhf.org/donate.

a publication of hearing health foundation

spring 2022

21

managing hearing loss

life

in

spired w

Not Quite Business as Usual A hearing loss support specialist who has been instrumental in improving access to hearing aids weighs in on “blended distribution.”

By Stephen O. Frazier The email’s subject line read, “Your #1 source for better hearing!” Probably junk, I thought, but I was intrigued and the outcome was not what I expected.

Within a couple of days I was participating in a 45-day free trial of Signia hearing aids from Hear.com. Should I decide to keep them, the pair would cost me $2,750 versus $6,000 at a typical private clinic. A little online research found these exact hearing aids were priced anywhere from $3,700 to $6,000, based on an online sampling of hearing care offices that post their prices. I felt I would be getting a deal comparable to the savings available at Costco, where I’d been buying my hearing aids for the past 20 years.

How Hear got my name is a mystery to me. I got the message on one of my email accounts and then a few days later, on a different account, so I suspect they’re buying addresses from some hearing loss-related source on the internet. The emails in question were sent by a company owned by a hearing aid manufacturer, using what is called “blended distribution.”

The company is WS Audiology (WSA), which develops, manufactures, sells, and distributes hearing aids and services under brands including A&M, Audibene, Audio Service, Bloom, Coselgi, Hear.com, HearUSA, Lifestyle Hearing Network, Rexton, Signia, Shoebox, TruHearing, and Widex—sort of the General Motors of the hearing aid industry. (To be fair, there are only a few major hearing aid manufacturers worldwide, see page 24.)

WSA still sells hearing aids to independent hearing care providers who usually mark up their cost and then resell them to clients. But now they also sell them directly 22

hearing health

hhf.org

to consumers over the internet—through a subsidiary they own, at prices competitive with those offered by Costco, Sam’s Club, and other off-price hearing aid sellers that these independent providers cannot match.

The online subsidiaries then usually refer the buyer to one of their affiliated local audiologists or hearing instrument specialists, where a hearing test is administered and the hearing aids are programmed and dispensed.

Not Really New

This business model is not new. ZipHearing introduced online hearing aid sales a decade ago as did Audicus.

Both, still independently owned, are major players in this growing segment of the industry. Online Hearing and Precise Hearing are two other online hearing aid sales outlets in the expanding field of “mail order” hearing aids, and the concept is just one of many changes taking place in the hearing care industry.

They were preceded in the business by the very successful entry of Costco and then Sam’s Club. Walmart and chains like CVS dabbled in the business but then got out. The latest iteration of the hearing aid sales business will be the entry later this year of the long-promised, direct over-the-counter (OTC) sale of hearing aids—expected to be on the shelves at your local Target, Walgreens, and elsewhere by the fall of 2022.

GN Group, the manufacturer of hearing aids branded ReSound, Beltone, Interton, Jabra, BlueParrott, and FalCom, has also recently adopted this business model with their recent purchase of Lively, which, like Hear,

ork

managing hearing loss

started out as an independent business. Swiss-owned Sonova, whose brands include Phonak, Unitron, and Hansaton, is using blended distribution through HearingPlanet where you can buy their brands or those of competitors. It should be noted that I found substantial price differences for specific hearing aids among these blended online retailers—which is likely because those brands were not one of theirs.

The blended business model relies heavily on the internet to capture customers, and it’s reported that those customers are around 10 years younger than the typical hearing care office’s clientele. Tech-savvy boomers are accustomed to researching options and shopping online, and they may find and rely on resources such as the Hearing Loss Association of America and the consumer section of the American Academy of Audiology.

In the process of searching online, these consumers will come across the websites of these blended hearing aid providers where they’ll find a wealth of information on hearing loss and its treatment. They may find these websites offer them little of the “hard sell” rhetoric from private clinics, where audiologists or dispensers are often working on a commission.

Hearing Aid Features

To begin the process, my Hear consultant and I had a discussion regarding the various features available such as rechargeable batteries, the number of programs available, and other standard features. When I told him telecoils were a must-have feature for me, he looked over the two devices he thought would come closest to meeting the criteria I had given him. It turned out that Hear’s private label, Horizon, did not offer telecoils, so my only option was the Signia Sure C&G 7X behind-the-ear model.

In the case of Hear, in addition to the information on their website, once I started my free trial there was a whole series of follow-up emails discussing acclimating to the hearing aids and other useful information. Following my request to participate in the 45-day free trial, the Hear consultant made an appointment for me to meet with a local independent hearing aid dispenser for a hearing test and then delivery of the hearing aids adjusted to match my audiogram. This resulting office visit was no different than when I’ve purchased hearing aids in the past except I was to pay Hear directly, not the dispenser, and pay the dispenser’s $100 fee for the testing and fitting. I should note that unless I’m experiencing a hearing or ear problem a dispenser is not trained nor allowed to deal with, I have no problem with using a dispenser to fit me with hearing aids, versus an audiologist.

Comparing the New to the Old

The blended business model relies heavily on the internet to capture customers, and it’s reported that those customers are around 10 years younger than the typical hearing care office’s clientele.

Tech-savvy boomers are accustomed to researching options and shopping online, and they may find and rely on resources such as the Hearing Loss Association of America and the consumer section of the American Academy of Audiology.

The Signia hearing aids worked well and I was seriously considering keeping them, but there were some features I did not like. In my Rexton hearing aids, if I adjusted the volume higher on, say, the telecoils setting, then left that setting for a couple of minutes and then went back to it, the volume setting remained where it was before I left. With the Signias I had to constantly reset the volume, which is inconvenient because I switch between hearing aid programs regularly, especially when watching TV. The noise suppression program in the Signias also did not seem to be as a publication of hearing health foundation

spring 2022

23

managing hearing loss

hearing health foundat i o n

effective as the one in my Rextons. For example when riding in the car, the Rexton program almost completely stopped the sound of rushing air coming from the window nearest my ear. The Signia program did not, and to get the same relief from the Signias I had to boot my smartphone and use a directional mic program controlled only in that way.

I downloaded and tried the Signia app to make various adjustments in the hearing aid settings. This included what I was told is a feature unique to Signia—the ability to focus hearing aids on any or all of the various sections of the area surrounding me, including directly in front of me.

I gave it a try and it really does work—the mics can 24

hearing health

hhf.org

focus on a narrow band of sound coming from right in front of you, from your left or your right, or from any direction around you. They also focus on distant sounds or just nearby sounds. I tried several different settings when dining out and it reduced background noise considerably while allowing me to hear my dinner companions. This is something my old devices can’t do, but through research I discovered new Rextons can, too.

What Now?

The good folks at Hear really did want to accommodate my objections to the features I balked at with the Signia hearing aids and did yeoman duty trying to find other

chart credit: hearingtracker.com

The online hearing resource Hearing Tracker produces this hearing industry map each year based on manufacturer websites and investor reports as well as their own reporting.

managing hearing loss

options. But the alternates they found were not subject to the same competitive pricing as the Signias.

At decision time I decided to punt. Here’s why: My old hearing aids work though they could no longer get through a full day without being recharged. They will still work well with standard 312 batteries that last for a number of days. They’re Bluetooth-capable even though I don’t use that feature much. They contain telecoils that I use a lot. They let me set the volume where I want, and it stays there if I leave and then return to that program, which the Signias did not do.

My old hearing aids have no smartphone app but I found it to be a nuisance to boot my smartphone, unlock it, and then wait for the very slow app itself to start making any basic adjustments to my hearing aids. When I was testing the Signias, I only used their app to change the volume on one hearing aid without changing the other one, adjust the tone control, or use the directional mic program.

The return of the devices could not have been easier. I just dropped them off with the dispenser who had tested me. Follow-up from Hear was cordial as they emailed a request for my reasons for canceling the sale, and the refund came through quickly.

Maybe, if there are others like me who want to have more control of the volume settings on their hearing aids, manufacturers will hear us. But for the time being I’ve decided to stick with my old hearing aids and, if need be, send them to the same trusty repair shop in Dallas I use for out-of-warranty hearing aids.

Still, Try the Blended

Overall, my experience with blended distribution was a positive one and I am inclined to suggest to others that they not wait for an email invitation for a “45-day free trial.” As its author, I knew that New Mexico has a mandatory 45-day trial period for hearing aids, but a less experienced client may not be aware of a state regulation.

Twenty states do not even have such a regulation, and many that do require only 30 days—so the 45-day free trial offer could be meaningful and appealing in many states.

Go online yourself and give the process a try—you’re under no obligation to keep the hearing aids. If you don’t keep the hearing aids, you could lose the $100 fee for the test and fitting, but if you decide to keep them you could save $2,000 to $3,000 off the usual price.

If you’re not ready yet, wait and see what’s coming next. Some manufacturers are looking to open stores in

Overall, my experience with blended distribution was a positive one and I am inclined to suggest to others that they not wait for an email invitation for a “45-day free trial.” pharmacies, competing directly with the lower-cost OTC devices for mild to moderate hearing loss. While this was tried before, it could work the second time around.

Customers looking at the OTC hearing aids would no doubt try to get advice from a nearby dispenser who will have their own hearing aids to sell.

Then there are the regulations currently found in most states that hearing aids must be dispensed by a licensed provider. All signs point to a blurring of the line between OTC hearing aids and prescription hearing aids.

Trained by the Hearing Loss Association of America as a hearing loss support specialist, New Mexico resident Stephen O. Frazier has served HLAA and other groups at the local, state, and national levels as a volunteer in their efforts to improve communication access for people with hearing loss.

For more, see sofnabq.com and loopnm.com. The hearing industry map is used courtesy of Hearing Tracker. For references, see hhf.org/spring2022-references.

Share your story: Tell us about your experience buying hearing aids at editor@hhf.org.

Support our research: hhf.org/donate.

a publication of hearing health foundation

spring 2022

25

research

Seed funding for projects across the entire spectrum of hearing and balance

Why I Appreciate My

#StartWithERG

By Regie Santos-Cortez, M.D., Ph.D.

I grew up in metro Manila and received my medical degree from the University of the Philippines Manila College of Medicine–Philippine General Hospital, where I also did a residency in otorhinolaryngology. Because of my interest in the genetics of hearing loss, I received scholarships to study genetic epidemiology at the Erasmus Medical Centre in Rotterdam, the Netherlands, and at Baylor College of Medicine in Houston.

After obtaining my Ph.D., I practiced otolaryngology in the Philippines while initiating a project on otitis media (middle ear infection) genetics. Eventually I made the decision to move to the United States and give up my surgical career.

I decided to go into research full-time instead of going back into residency or fellowship training.

It was a huge leap of faith for me. The Emerging Research Grant (ERG) awarded to me by Hearing Health Foundation was the first grant I received as an early-career researcher in the U.S. and set me on the right path. ERG funding was instrumental in transforming an incubator research project on otitis media genetics into a research program that is the basis for my current lab where I am an independent principal investigator. However, even though I am no longer involved in clinical practice, my experience as an otolaryngologist has continued to inform my research and helps me to understand the perspectives of both clinicians and patients.

Genetic Discovery

The ERG grant was awarded for 2011–2013, and continued until 2014 thanks to a no-cost extension year. The project was titled “Identification of genes that predispose to chronic otitis media in an indigenous Filipino population.”

ERG funds were used for genetic sequencing (specifically, exome sequencing and follow-up Sanger sequencing) using DNA samples from an indigenous population that had a very high prevalence of chronic otitis media.

Using the sequence data, we identified the first rare variant for otitis media in humans. This is in the A2ML1 gene which encodes a protease inhibitor. This was published in Nature Genetics in 2015, with HHF cited as a funding source.

Based on our A2ML1 finding, our group of collaborators obtained an R01 grant from the National Institute on Deafness and Other Communication Disorders (NIDCD) that was funded from 2016 to 2022. The aims of the R01 study were to identify novel variants that contribute to otitis media susceptibility and induce changes in the middle ear microbiome.

26

hearing health

hhf.org

research

University of Colorado associate professor Regie Santos-Cortez, M.D., Ph.D. (second from left), and her team.

This R01 grant also had follow-up supplements, including for research training of a resident in the lab. As an offshoot of this project, we received a small campus grant that also looked at the microbiota of the middle ears and nasopharynges of children with otitis media and Down syndrome.

Institutional Cooperation

Thanks to the funding from these grants, over the past seven years we have published 15 papers that describe various aspects of otitis media, including six genes with variants co-segregating in families or associated with otitis media, differentially expressed genes in tissues from patients with otitis media, and shifts in the middle ear or nasopharyngeal microbiota that are associated with carrying specific genetic variants. Additionally, we have several manuscripts under review or for submission, and these studies describe novel genes and variants and associations between otitis media and microbiota.

From an initial collaborative group of seven institutions in the U.S. and in the Philippines for the ERG project, we have expanded our otitis media group to include 12 institutions internationally. This has helped me spearhead another project on genomic hearing loss with six institutions, both in the U.S. and abroad, that was recently funded as an R01 grant by the NIDCD until 2026.

More importantly the initial A2ML1 study funded by ERG has spawned so many other studies that we are not limited to gene identification alone but are now embarking on multi-omic studies that help place our findings within a clinical context. We are also working on an A2ML1-knockout mouse model that we hope will be useful for translational research. I am grateful that receiving the ERG 11 years ago helped me on this stimulating research path that has led to new discoveries, fresh perspectives, and international alliances.

Regie Santos-Cortez, M.D, Ph.D., is an associate professor in the department of otolaryngology–head and neck surgery at the University of Colorado Anschutz Medical Campus. A 2011–2012 Emerging Research Grants alumna, she presented her research on chronic pediatric ear infections and related hearing loss in a webinar in January 2022, viewable at hhf.org/webinar.

Thanks to the funding from these grants, over the past seven years we have published 15 papers that describe various aspects of middle ear infection.

Support our research: hhf.org/donate.

a publication of hearing health foundation

spring 2022

27

hearing health

life

hearing health foundation

in

spired

A Wakeup Call

w

A band class hearing injury inspires a student advocate to lead classes on protecting hearing. By Ben Manley Whether or not you’re knowledgeable about noise-induced hearing loss, you’d probably try to avoid things like having a trumpet blasted point-blank into your ear. But that was me, 10 years ago, in a 7th grade band class, crying from the pain in my ear and leaving school early so my mom could whisk me straight to an audiologist.

I sat through all the tests—raising and lowering my hand for beeps of various frequencies—and the audiologist delivered the diagnosis: While I may not notice anything for years (perhaps even decades), the damage I’d incurred would most likely result in significant hearing loss as I got older.

A decade later, I am fortunate to say I don’t have a noticeable, daily symptom like tinnitus (ringing in the ears). However, I do have more sensitive ears (a mild form of hyperacusis) and need phrases from conversations repeated more often than others around me do—all because of a split-second mistake made by a middle schooler 10 years ago.

At the time, my family and I had never really considered the dangers of noise exposure, but this experience was a wakeup call for all of us. After looking into noise-induced hearing loss (NIHL) and related topics, we were surprised to discover how little we and our friends knew about it.

We learned that even seemingly innocuous things like listening to loud music over time could cause the exact same long-term hearing loss as that one-time trumpet blast. Though I had no control over what had happened in band class that day, I realized that people everywhere were inadvertently giving themselves the same lifelong consequences through their own uninformed actions.

A middle school student at the time of the band class incident, I thought it would be interesting to find an extracurricular activity that somehow related to my experience. Turns out, luck was on my side. When my family and I researched organizations related to NIHL, we discovered an educational nonprofit based just minutes from our house: Ear Peace Save Your Hearing Foundation, also known by its shorter name Ear Peace Foundation.

Founded by Adele Sandberg and directed by Sherilyn M. Adler, Ph.D., Ear Peace Foundation educates young people about the dangers of NIHL and how to take preventive measures to protect their hearing. If their classroom lesson had been taught to my middle school peers, it might have completely prevented the trumpet blast that left me with permanent damage! I was invited to become Ear Peace Foundation’s first student ambassador to help spread the word about the NIHL epidemic and its simple prevention.

Throughout middle school and high school, I presented directly to hundreds of students in classrooms around South Florida, a few classes in Illinois, and a summer program at the Juilliard School in New York City. The fact that I was a fellow student with a casual style differentiated my presentation from the everyday lessons taught by “the adults” and created an immediate connection with the other kids.

The Ear Peace Foundation classroom lesson is interactive, combining information

28

hearing health

hhf.org

ork

hearing health

about sound and hearing with activities in which students participate. During one such activity, we hand out pipe cleaners representing inner ear hair cells and give the students a quick “dance party” in which they experience the pipe cleaners getting bent due to the dangerously loud noise. Most students find the lesson to be fun and engaging, and (most importantly) they are visibly interested in the information they have just learned.

Since graduating from high school in 2017, I have served on the Ear Peace Foundation board. During that time, my contributions have shifted away from the classroom and have been directed more toward creating and editing PSA videos, helping manage the organization’s online content, and participating in interviews, including one featured in a documentary film by Ralph Loop called “The Wonder of Hearing.”

I’m most proud of helping to develop and narrate Ear Peace Foundation’s free 30-minute classroom presentation, a lesson that can be presented in person, virtually, or totally online. In less than a single class period, any teacher (elementary through postgraduate) can ensure that their students have access to the critical information they need to protect their hearing! I hope that, eventually, this lesson will become a required part of all K-12 curricula, in the same way that schools already teach safety protocols (like using bike helmets, seatbelts, and sunscreen) and other science-based health information intended to protect students from the dangers of drug/alcohol addiction, sexual abuse, and bullying.

Ben Manley demonstrates how to properly insert earplugs to students in a summer program at the Juilliard School in New York City.

The fact that I was a fellow student with a casual style differentiated my presentation from the everyday lessons taught by “the adults” and created an immediate connection with the other kids.

Of course, I also take actions daily to protect my hearing and, hopefully, set an example for others. I know that the silicone earplugs I carry on my keychain have inspired more than a few of my friends to carry their own to parties and concerts.

While it took an unfortunate injury for me to learn about the importance of hearing preservation, I encourage everyone reading about my experience to make it a priority to learn about NIHL and its prevention and to share that information with young people. It is especially important to reach children and young adults since they are the ones who so often expose themselves to loud sound and, unknowingly, put their future hearing at risk.

Ben Manley is in his fifth-year master’s program at the University of Michigan, graduating in May with a master’s in computer science. He will be moving to Seattle for full-time work in August.

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

spring 2022

29

living with hearing loss

life

hearing health foundati o n

in

spired w

ork

Let’s Remember No One Hears Perfectly

By Pat Dobbs

My cochlear implants have given me the gift of hearing.

It’s a miracle and I’m grateful for them every day. But as wonderful as they are, some hearing situations can still be challenging. A dinner party with a group of people all talking at the same time is a good example.

When I’m challenged and cannot hear conversations well, I go right to my toolbox.

I sit where I know I’ll be able to hear better, with my back against the wall. I ask people to look at me when they talk and talk clearly and loudly. I use my assistive listening devices. I whip out my phone and activate my Otter.ai app (it uses artificial intelligence to transcribe voice to text real-time). I may suggest to the person I want to talk to that we go to a quiet place to talk. If these strategies don’t work, I use paper and pencil. Then I’ll be sure to understand what a person wants to say.

But in large gatherings these strategies don’t work as well. That’s when it’s time for my next move.

I dominate the conversation by talking nonstop!

That way I know exactly what’s said, because I’m the one saying it! If that doesn’t work, I again monopolize the conversation by asking a consecutive series of questions.

I realize it’s obnoxious but who cares—at least I know the topic of the conversation. Knowing the topic makes it easier to figure out the context of the person’s answers.

Of course, this can’t go on for the whole party.

Okay, I admit it. My usual tools aren’t working and I’m getting less sure of myself.

I wonder if I should mimic people’s facial expressions.

Should I laugh when others laugh? Or frown when they frown? Or just sit there expressionless? I’m torn. What should I do?

I can’t help it but the stigma of hearing loss creeps into my psyche. Deaf, dumb, and stupid enters my mind. Is that what people think of me when they see my blank face or if I laugh when laughter isn’t appropriate?

I dominate the conversation by talking nonstop! That way I know exactly what’s said, because I’m the one saying it! If that doesn’t work, I again monopolize the conversation by asking a consecutive series of questions. I realize it’s obnoxious but who cares—at least I know the topic of the conversation. Knowing the topic makes it easier to figure out the context of the person’s answers. Of course, this can’t go on for the whole party.

30

hearing health

hhf.org

living with hearing loss Opposite page: Pat Dobbs with her dog Cobb.

Ugh, I can’t hear!

I hate to admit it, but I start thinking like a victim. Why me? I think. Everyone else can follow the conversation. I feel so stupid. The stigma of hearing loss enters my mind like a rush of wind.

I’m feeling so upset that I can barely stand to sit at the table for another second. I excuse myself and go to the bathroom. I sit down, try to relax, and maybe take a few deep breaths.

I know there’s a way to get out of this funk. I’ve done it before.

Eventually my thinking mind kicks in. I remind myself that I have a hearing loss and that’s why I can’t hear as well as people with normal hearing. It has nothing to do with my intelligence.

That makes sense. I repeat this to myself to make sure I take it in: I miss conversations because I have a hearing loss. But does my gut believe this? It sounds logical enough. But my gut shouts... no, no, no, no.

I take some more deep breaths and go back to my thinking mind.

No one hears perfectly, right? A typical hearing person also has trouble hearing in noisy environments, but they don’t feel stupid. It’s no big deal for them. They accept it without judgment.

Why can’t all of us with hearing loss accept our hearing challenges without judgment as well? It’s a physical disability that we have no control over. If we can’t hear, it has nothing to do with our intelligence or any of the negative stereotypes of hearing loss. It’s just hearing loss—a physical condition.

Can I accept my hearing challenges as simply a part of my physiology that has nothing to do with the negative stereotypes?

My gut is getting ready to accept the truth. I have a hearing loss. It’s a physical condition over which I have no control.

Now I’m feeling better. I remember the amazing hearing technology that is available today—advanced hearing aids, cochlear implants, and assistive listening devices—plus, the sophisticated research that Hearing Health Foundation is doing to advance our future.

When I come to this realization, I start to feel at ease.

Going back to the dinner party, I feel confident now about going to my hostess and explaining that I need to find a quiet place. What follows is interesting. When other people see me sitting in a quiet place, they join me because it’s too noisy for them too! Interesting. I’m not the only one who has difficulty with all the noise

and chatter of a big dinner party.

However we decide to handle uncomfortable hearing situations, the important thing is to understand in our mind and gut that our challenged hearing has nothing to do with the stigma of hearing loss. It’s just our ears not hearing in the typical range.

Trust me. I know it can be hard to take in. It’s taken me years to understand that the stigma of hearing loss is a stereotype that is the result of not understanding what hearing loss is. It wasn’t understood that if we answer a question out of context, or not respond to a question, it is only the result of not being able to hear. As I’ve said before, and will say again and again, it’s just because we have a hearing loss.

With this knowledge, I’m able to advocate for myself.

The more I advocate for myself, the more confident I feel.

Then, I not only advocate for myself in hearing situations but in life in general. I’ve become a more confident person.

Am I grateful for my hearing loss? Well—I wouldn’t go that far, but having gained more confidence has helped me in all areas of my life.

And I’ve met so many wonderful people. Hmm, maybe I am grateful for my hearing loss!

Pat Dobbs started to lose her hearing when she was 20 and today is the happy recipient of cochlear implants. Through most of her life she bought into the stigma of hearing loss until finally she came to terms with it. She launched the Hearing Loss Association of America Morris County Chapter in New Jersey, serving as president. She also attended Gallaudet University’s two-year peer mentoring program. Inspired by this program, she designed and facilitated a series of workshops on managing hearing loss, and began a coaching practice focusing on the unique personal, career, and relationship challenges unique to people with hearing loss. Now a resident of Maine, Dobbs is the president of SayWhatClub, a global online hearing loss support group. For more, see Hearing Loss Evolution, at hearinglossevolution.com.

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

Support our research: hhf.org/donate.

a publication of hearing health foundation

spring 2022

31

workplace

life

h ear i n g health foundation

in

spired w

How My Hearing Loss Inspired My Tech Career

By Brooke Wayne

Ever since I was young, I’ve been obsessed with getting complete information. Being born with bilateral profound hearing loss to two Deaf parents and having one hard of hearing sister meant a life of constant misunderstandings and questions. This lifelong pursuit for information would end up making me an expert in communication and lead to my career in technical writing.

Exploring Alternative Forms of Communication

This quest for information began as soon as I was born.

My parents, who were also Deaf, had experienced so much adversity themselves. There was no hesitation in raising my sister and me in both the Deaf and hearing worlds if it meant better chances for success.

As a result, I was given hearing aids as a newborn. Next, I had speech therapy sessions to learn how to hear, speak, and read lips. I was also encouraged to learn my parents’ primary language, American Sign Language (ASL), which certainly came in handy around the kitchen table. My parents made sure that we knew about cochlear implants (CI), a medical device that bypasses the damaged inner ear by simulating the auditory nerve directly to provide a greater range of hearing sensitivity. They left the decision of getting a CI up to us. Although I was happy with my hearing aids at the time, I changed my mind in my 20s and got one then. Suffice it to say, I had a lot of options to help me communicate with others.

Despite all the tools and resources I had at hand, 32

hearing health

hhf.org

I was losing information every time it was verbally communicated to me—like water through a sieve. It was especially frustrating during school, and I loathed having to rely on others to fill in the gaps. Copying the smartest kid’s class notes wasn’t enough; their notes were a summarized version of the complete information they had heard. Using a frequency modulation (FM) system to make the noisy environment clearer was useless; I was too reliant on lipreading (speechreading), so no increase in sound and clarity would fill in the information gaps.

It was no surprise that I preferred visual learning, and that evolved into a love of reading and writing. With all the information captured in words, I could read instead of fail to hear. Between closed captions on the TV and a neverending supply of books, my reading speed and vocabulary rapidly surpassed that of my peers.

In the meantime, my appreciation for ASL as a visual language grew while I attempted to converse in sign with my parents, their Deaf friends, and a few Deaf friends of my own. This blended upbringing was incredibly valuable; it taught me that information could be conveyed in myriad ways, and each method had its own pros and cons.

I found beauty and diversity in the written word, from Shakespeare to an argumentative essay and everything in between, but also in the body language and spatial awareness of sign language. I wouldn’t realize it until many years later, but seeking alternative forms of communication through writing and ASL shaped my versatility as a technical writer.

ork

workplace

Opposite page: Brooke Wayne says this is a photo of her in her natural element, writing away.

Wayne shares this conversation with a colleague in 2019, a few years after she became a tech writer.

photo credit: bettina bogar

Finding the Right Accommodations

As I got older, parts of my education continued to suffer from loss of information. There was only so much I could learn from books in certain subjects when so much of it was still being taught verbally. With the help of some incredible hearing resource teachers, a lot of petitioning on my part (including one persuasive speech to representatives at the Toronto District School Board), I was able to secure funding for a pilot of communication access realtime translation (CART) accommodations. In this pilot, a contractor with exemplary typing speed sat down next to me with their laptop, capturing all spoken speech into text that I could read in real time. It was my very own live closed captioning in the real world, and it blew my mind how much verbally communicated information I was missing out on.

The pilot was so successful that the CART accommodations extended into high school for some of my core classes. My grades shot through the roof and awards started trickling in. Thanks to government bursaries and grants covering the expenses, I continued to utilize CART accommodations in my post-secondary education at Ontario College of Art & Design University.

Advances in screen-sharing apps also gave me back some independence because I could sit wherever I wanted in class, while still being able to see my notetakers’ transcribed text appear on my screen.

It also allowed me to practice a core skill that I was behind on: how to write my own notes. After every class, my notetaker would email me their notes—anywhere from 15 to 30 pages—for me to keep and use as I saw fit. I would

take those original transcripts, quickly reread them, and rewrite my own separate notes containing only the salient information. Later, I would use my very own notes for studying and referencing. Better late than never—here I was, finally learning note-taking.

This, along with attending an arts university, also taught me how to explain creative works by communicating abstract ideas into clear and tangible terms, as well as developing my critical thinking and analysis skills. Without meaning to, I had learned how to extract important information from large swaths of documentation and how to communicate in an accessible manner—key skills in technical writing.

Improving Documentation for Others

It wasn’t until many years post-university that I realized I had a passion for information, and that I could turn it into a career. During my job as a customer support specialist for FreshBooks, I realized I wasn’t the only one struggling with access to information during onboarding.

Our support documentation was out of date, inaccurate, and disorganized. I had to depend on my colleagues through messaging them on Slack or shoulder-tapping them in person. I felt like I was reliving my childhood and having to rely on others for information, except it wasn’t just happening to me. This continued to bother me during my years in the role, where my product knowledge continued to grow and my communication and writing skills improved with every customer support email. My emails were often used as positive examples for new hires.

My product knowledge grew to the point where people a publication of hearing health foundation

spring 2022

33

workplace

h ear i n g health foundation

I found beauty and diversity in the written word, from Shakespeare to an argumentative essay and everything in between, but also in the body language and spatial awareness of sign language. I wouldn’t realize it until many years later, but seeking alternative forms of communication through writing and ASL shaped my versatility as a technical writer.

who had worked there longer than I had were asking me the questions instead.

When my team lead asked me the inevitable question of where I saw myself in a few years, I knew I didn’t want to become a people manager or move into a higher tier of support. It was through many months of brainstorming that I realized there was no dedicated owner for support documentation and my passion for writing made me a natural fit. I seized the opportunity, taking on technical writing as a side project while still working the job I was hired for.

I eventually amassed enough qualitative and quantitative data to pitch a brand new, full-time role for myself: managing documentation. With my fast reading and comprehension skills, I could synthesize information rapidly and communicate it in an accessible manner. I was already a technical writer without realizing it, and thankfully FreshBooks’ leadership decided to take a chance and make it official.

The Journey Never Ends

Currently as a program manager of communications, I develop simple and fast access to accurate product information, and reduce support load by improving self-service resources for customers. In other words, I take complex information and rewrite it to make the information more accessible for others.

After all, what better person to write thorough and accessible documentation than someone who’s had to rely on others’ notes their whole life? I knew how frustrating it was to not have all the information at hand, and to have to rely on others to capture that information in other ways for me.

In a way, my hearing loss forced me to acquire skills and experiences which turned out to be vital to my ambition for a career in technical writing. It gave me the ability to flex into various writing styles, the ability to synthesize dense information, and the ability to explain concepts clearly, along with the empathy required to understand the barriers in accessing information.

All of this would not have been possible without access to the tools, accommodations, and allies that helped advocate for me along the way. Some days, my being hard of hearing makes it difficult to do my job, and other days, it makes me better at my job because of what I’ve learned from it. But no matter what, I always look forward to writing and wrangling information every day.

Brooke Wayne lives in Toronto, Ontario, and created her own job as FreshBooks’ first-ever technical writer. For more of her writings, conference talks, and artwork, or to reach out, see brookewayne.com. Please see her sister’s story starting on the following page.

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

Support our research: hhf.org/donate.

34

hearing health

hhf.org

workplace

life

in

spired As a psychologist, Rachel Wayne, Ph.D., C.Psych., focuses on disability and hearing health.

w

From Reading Faces to Publishing Research A hearing loss makes for a highly attuned ability to read facial expressions, and a career in research and psychology. By Rachel Wayne, Ph.D., C.Psych.

I spent the first 20 years of my life attempting to hide my congenital hearing loss. Like most kids, I just wanted to fit in and be like everyone else. I didn’t like having to explain to my peers whether or not I was “deaf” or what that “thing behind my ear” was. I also didn’t like having to explain to teachers during the first day of school every year why I needed to be seated in the front row. For these reasons, my younger self could have never predicted that I would have ended up focusing on disability and hearing health within my career.

Growing up as a hard of hearing individual with two hearing aids, I relied heavily on lipreading (speechreading). This made me a keen observer. Oftentimes in conversation, you can’t quite make out what was said. You hear fragments of a sentence and try to decipher the missing words or phrases. When you have to work to fill in the missing pieces of what your ear “hears,” it becomes supremely important to gather and observe as much information about context as you can. Your environment, the topic of the conversation, the person you’re with, and your familiarity with language (such as how sentences are parsed or phrased) all become important clues in the puzzle.

For example, you’re just finishing a drink with a very attractive new friend in a loud and crowded bar. Just as you’re about to leave, your friend leans close to you and says: “I have a

a publication of hearing health foundation

spring 2022

35

ork

workplace

h ear i n g health foundation

Growing up as a hard of hearing individual with two hearing aids, I relied heavily on lipreading (speechreading). This made me a keen observer. Oftentimes in conversation, you can’t quite make out what was said. You hear fragments of a sentence and try to decipher the missing words or phrases. When you have to work to fill in the missing pieces of what your ear “hears,” it becomes supremely important to gather and observe as much information about context as you can. Your environment, the topic of the conversation, the person you’re with, and your familiarity with language (such as how sentences are parsed or phrased) all become important clues in the puzzle. green tie, would you like to go eat some pine trees?” Or at least that’s what you think you hear. You are considering asking your friend to repeat the sentence when you start piecing together several clues. You silently repeat the utterance to yourself a couple of times. Based on the lip movements, you infer that the last word you heard looked more like “week.” You deduce that you actually heard your friend say, “I had a great time, would you like to go out again next week?”

Graduate School and a Thesis

This was essentially the work of my doctoral thesis research, which was about the ways in which cognition (e.g., thinking, reasoning) are involved in understanding speech in conditions that are less than ideal. This includes speech in noisy environments and listening to people who speak with accents that are different from our own.

It was very rewarding to be able to translate my lived experiences into research.

In another instance, my observations about my own speech comprehension led to the development of an entire research paper. I first started wearing corrective eyeglasses during my Ph.D. studies. Even though I had quite a low prescription, I immediately noticed that I was better able to lipread my colleague who spoke with an accent.

After some discussion, we came up with the hypothesis that perhaps good lipreaders are better able to make use of extremely fine-grained details in facial movements.

We did, in fact, find support for this, and we eventually 36

hearing health

hhf.org

published this study in the journal Attention, Perception, & Psychophysics in 2016.

Training in Clinical Psychology

In parallel, I’ve always been interested in psychology and trying to understand what makes us human, and why we think or behave the way we do. I also knew that I greatly valued communication and forming strong connections with others. As such, it was a natural decision to pursue graduate training in clinical psychology (while completing my thesis research in cognitive hearing science).

My clinical training was certainly not without its own challenges. I can hear and speak quite well, well enough in fact that many people don’t realize that I am hard of hearing until I mention it. However, I’ve also learned that sometimes this makes it difficult for others to recognize or understand the challenges that I face during communication.

To my surprise, there were times that I felt that my instructors and supervisors questioned my need for accommodations. For example, this happened when I asked for subtitles/closed captioning of training video material, or for real-time transcription or notes from virtual lectures. As a result, instead of blending in, I found myself in a position of having to advocate for the accommodations that I needed.

I also learned that I needed to disclose my hearing challenges up front to all new clients, as inevitably there would be points in which I would require them to repeat

workplace

themselves in communication. Initially, this made me quite nervous, as I was not sure how clients would react. Would they question my aptitude or get frustrated with me?

Toward an Integrated Identity

At times, these conversations were inevitably uncomfortable.

However, looking back, they were instrumental in helping me achieve increased acceptance of my disability. I’ve learned that my initial disclosure of my hearing challenges allowed me to more readily connect with my clients. In some ways, it helps cultivate an honest and forthright environment that encourages my clients to feel comfortable sharing their own challenges or vulnerabilities with me.

Today, my personal experiences and professional training continue to converge in my everyday work, especially as I continue to bring my own lived experience into the foreground. I eventually chose to pursue additional specialization in rehabilitation psychology, which allowed me to gain a better understanding of how to work with individuals adjusting to chronic medical conditions or other forms of disability.

It is extremely rewarding to be able to marry my own lived experience with my clinical skills and research background, particularly in supporting individuals who may be experiencing challenges adjusting to their hearing loss or tinnitus. The process of connecting with others and helping them cope with significant stressors has also been incredibly fulfilling.

And Beyond

I have learned that self-disclosure of my hearing challenges need not be viewed as a liability. We are all living in a world that is increasingly mindful of individual differences, whether it be related to disability, neurodivergence, race, culture, or sexual orientation (to name a few). Each of us has different needs, preferences, as well as lived experiences that we bring to each interaction or conversation with one another.

The process of relating to one another is ultimately a negotiation that occurs between our distinct worldviews, one that aims to arrive at a shared consensus of the “truth.” At its best, educating others on how to best meet our individual needs or desires leads to an increased sense of mutual understanding and respect, and perhaps most profoundly, an enriched society for all.

Rachel Wayne, Ph.D., C.Psych., is a registered clinical and rehabilitation psychologist working in private practice. She has received numerous awards for her published research.

For more, see drrachelpsychology.com.

I learned that I needed to disclose my hearing challenges up front to all new clients, as inevitably there would be points in which I would require them to repeat themselves in communication.

Initially, this made me quite nervous, as I was not sure how clients would react.

Would they question my aptitude or get frustrated with me?

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

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

spring 2022

37

research

Collaboration Remains Key A year into the working groups reorganization, the Hearing Restoration Project remains focused on cross-species analyses and is meeting with regeneration experts in the other research fields. By Lisa Goodrich, Ph.D.

We have our first glimpses of genes expressed across datasets and are well on our way to having lists of markers that will benefit the entire inner ear research community. As ever larger and more complex data sets are generated, centralizing some of this work is critical to finding genes and pathways relevant to hair cell regeneration and moving the HRP into its next phase.

38

hearing health

hhf.org

As February drew to a close, Hearing Health Foundation’s Hearing Restoration Project (HRP) gathered over two days for its annual meeting, again by Zoom, to assess progress over the past year and prioritize for the future, near and longer term. The 2022 format differed somewhat from that of prior years in dividing each day into two parts, the first half featuring talks and presentations, and the second half dedicated to taking stock of progress since our last annual meeting and strategizing next steps. One important advantage in structuring the meeting this way is the ability to include HRP members’ postdocs in the first half. These early career researchers are instrumental in completing the day-to-day work of HRP projects, and we take seriously the consortium’s role in training the next generation of research scientists.

One of the presentations this year was by Seth Ament, Ph.D., co-chair of the Integrative Analysis working group, and Mahashweta Basu, Ph.D., HRP’s new full-time data analyst (see “Like a Master Class in Consensus,” opposite page). The Integrative Analysis working group has made outstanding progress toward focusing the cross-species analysis, starting with defining commonalities and differences among our target cells—the hair cells—which regenerate in some species and tissues and not in others. Having a dedicated data analyst is a welcome addition to the analysis that is conducted in every HRP member’s lab.

Due to Dr. Basu’s efforts, we have our first glimpses of genes expressed across datasets and are well on our way to having lists of markers that will benefit the entire inner ear research community. As ever larger and more complex data sets are generated, centralizing some of this work is critical to finding genes and pathways relevant to hair cell regeneration and moving the HRP into its next phase.

I was particularly excited to include this year an outside speaker—Freda Miller, Ph.D., professor of medical genetics at the University of British Columbia in Canada and an expert in stem cells and developmental neurobiology. Over the past year, the HRP has made a concerted effort to include perspectives from experts in regeneration in other fields. The spirit of collaboration that motivates the HRP itself similarly recommends that we learn from exchange with colleagues in other fields who grapple with challenges similar to the ones we face in the inner ear. Fittingly, Dr. Miller’s talk was followed by an update from consortium member Albert Edge, Ph.D., on stem cells in the inner ear and their ability to generate hair cells in cochlear organoids, a platform that will be increasingly important for screening genes and drugs in the future.

The second half of each day was dedicated to more fine-grained discussions about assessing the mechanics of HRP collaboration and clarifying goals and

research

priorities for the coming year. Limiting the second half of each day’s meeting to the HRP members encourages frank, open discussion among the group, which is critical for the type of team science the HRP embodies.

The group dove into details on specific initiatives, such as a joint HRP publication, and undertook broader evaluations of the working group structure and activities. Everyone agreed that we are already seeing the benefits of the changes we decided to make at the March 2021 annual meeting—that is, clustering research projects into three working groups: Cross-Species Epigenetics, Integrative Analysis, and Reprogramming and Gene Delivery. There is much excitement and enthusiasm for what we are able to accomplish together.

As well as setting goals for the coming year and reaching consensus on priorities, individual working groups began planning for proposals for the next round of funding. Given the working group structure, projects are now even more pronouncedly multiyear in nature, which means work plans are revised progressively in response to results.

Holding regular working group meetings in between our annual meetings is key to our ability to pivot as we learn new information, address unexpected roadblocks, and encourage brainstorming among members. Additionally, the consortium members genuinely enjoy coming together on a regular basis to talk about science and brainstorming new and creative ways to move the field forward.

As always, all of us in the HRP appreciate the opportunity to gather annually to take a bird’s eye view of the consortium’s work as a whole. Now that this year’s annual meeting is behind us and the working groups have begun drafting proposals, we are already looking forward to next year’s meeting, which—fingers crossed—will see us finally able to gather in person again.

HRP scientific director Lisa Goodrich, Ph.D., is a professor of neurobiology at Harvard Medical School. For more, see hhf.org/hrp.

Like a Master Class in Consensus By Mahashweta Basu, Ph.D. Mahashweta Basu, Ph.D., joins HHF’s Hearing Restoration Project consortium as a bioinformatics analyst.

I had been at the University of Maryland’s Institute of Genome Sciences for about two years when HRP member Seth Ament, Ph.D., mentioned that the HRP was looking to add a full-time data analyst to the consortium. Having honed my skills as a bioinformatician over the prior five years, I was excited by this opportunity to work with a team of researchers on data coming from and being compared across a number of labs spread across North America.

a publication of hearing health foundation

spring 2022

39

research

The opportunity to work with so many principal investigators and analyze data across species— fresh data, well in advance of its being published— is especially attractive. I am intrigued by the patterns they have in common, which is specifically what we are looking for.

Originally trained in physics at the University of Calcutta in India, I began to apply my training in statistical modeling to biological research as a doctoral researcher at the Saha Institute of Nuclear Physics, working on protein interaction and microRNA network projects. This was followed by postdoctoral research at the University of Maryland and then two Oak Ridge Institute for Science and Education fellowships at the U.S. Food and Drug Administration.

This work included transcriptomic analysis in different disease conditions and a variety of tissue types throughout the human body, and machine learning projects including prediction models and module identification in complex biological networks.

After I moved to the Institute of Genome Sciences, my focus shifted primarily to the brain, and so closer to the HRP’s work. I have continued to gain experience in working with large datasets and I am especially interested in prediction models, so the chance to join HRP was particularly exciting.

Having previously worked on studies led by a single principal investigator, I am keen to contribute to this kind of multidisciplinary, collaborative effort.

The opportunity to work with so many principal investigators and analyze data across species—fresh data, well in advance of its being published—is especially attractive. I am intrigued by the patterns they have in common, which is specifically what we are looking for. Of course, working with multiple large datasets and varied timelines like we have in the HRP can be a challenge, too, but one I welcome, and the HRP is a master class in how groups of researchers can come to a consensus about aims, timelines, and focuses.

Joining the HRP has been eye-opening, too, in learning specifically about hearing and the ear. People tend not to think about sensory organs like the ear until a problem arises. I continue to be fascinated with what I learn about the mechanisms whereby sound is converted to electrical impulses, and how certain genes can play a role in regeneration in some species, but not in others.

With each step we learn more, which is what I find most exciting about the research sciences: This is a process, and each new bit of information gives us some answers and also new questions.

HRP data analyst Mahashweta Basu, Ph.D., is at the Institute for Genome Sciences at the University of Maryland School of Medicine.

40

hearing health

hhf.org

research

Recent Research by Hearing Health Foundation Scientists, Explained Advancing Discoveries via Biologist-Friendly Access to Multi-Omic Data Data processing that analyzes a large amount of data about individual cells and measures them through multiple “omics” (such as genomics, transcriptomics, proteomics, epigenomics, and metabolomics) has advanced our understanding of biological sciences and medicine in an unprecedented way. This process is termed high-throughput, cell type-specific multi-omic analyses.

The full benefit of this data, however, is achieved through its reuse. Successful reuse of data requires identifying users and ensuring data democratization (accessible to average users) and federation, meaning users’ databases can be connected through a virtual centralized meta-database so their access to others’ data is meaningful. In our paper published in Human Genetics in March 2022, we discuss challenges in access and reuse of multi-omic data and possible solutions, including the gEAR (the gene Expression Analysis Resource).

Omics data generation and analysis has undergone rapid expansion since the publication of the human and mouse genomes two decades ago. Since then, technological advances have improved the speed, throughput (data processing), accuracy, and affordability of these technologies. Also, advancements in the past few years enable many of these interrogations to be performed at the resolution of a single cell, allowing us to understand spatial and temporal dynamics in extreme detail.

Multi-omic data serves as the basis for discovery and is usually published in conjunction with peer-reviewed manuscripts. While the manuscripts highlight key findings, and may offer pertinent gene lists as attached tables, by convention all the data, raw as well as processed, is deposited in repositories.

The value of the data increases when it is made available and subsequently reused by other users for new discoveries. Standardized computational approaches are needed that allow for the data’s findability and reusability. Size of files, access to data, appropriate form of data storage, data annotation, and lack of sufficient

experimental metadata are a few of the challenges for sharing and reuse of data. In parallel, we need to continue developing solutions to provide meaningful access to multi-omic data for biologists who are not trained specifically in informatics.

Having progressed from initial seed funding from HHF’s Hearing Restoration Project to now receiving significant National Institute on Deafness and Other Communication Disorders funding, the gEAR portal is an important example of this approach of democratizing data for a specific research community, that of auditory science.

Hearing loss, which affects 1 in 1,000 newborns and over 50 percent of the population older than age 70, may result from mutations in more than 150 genes distributed across the different cell types of the mammalian inner ear.

Cell type-specific omics have advanced our understanding of the inner ear cell types, identified critical regulators of cell fate, and uncovered some of the challenges in hair cell regeneration in mammals.

As a primary resource for data sharing within the ear field, the gEAR is cited for data validation, hypothesis generation, and data dissemination. The code, which is open source, has now been used to support research initiatives in other fields beyond the ear. However, such efforts require extensive investment. Funding agencies could propel discovery via the broad use and reuse of multi-omic data across disciplines.

—Ronna Hertzano, M.D., Ph.D., and Anup Mahurkar

A 2009–2010 Emerging Research Grants (ERG) scientist and a member of HHF’s Hearing Restoration Project, Ronna Hertzano, M.D., Ph.D. (left), is a professor in the department of otorhinolaryngology– head & neck surgery and an affiliate member of the Institute for Genome Sciences, University of Maryland School of Medicine at the University of Maryland School of Medicine. For more, see page 14. Anup Mahurkar is the executive director of software engineering & information technology at the Institute for Genome Sciences, University of Maryland School of Medicine.

a publication of hearing health foundation

spring 2022

41

research

Evidence of Brain Tissue Damage From Blast Overpressure Blast overpressure is responsible for 86 percent of U.S. service members wounded in action in Iraq and Afghanistan between 2001 and 2017. Many report postconcussive symptoms such as hearing loss, cochlear synaptopathy, tinnitus, hyperacusis, poor speech perception in noise, and cognitive deficits (such as learning, memory, attention, and emotional problems).

Concerns have emerged about the long-term effects of mild traumatic brain injury (mTBI), a signature injury in blast explosions, to which an accelerated incidence of lateonset neurodegenerative disorders has been attributed.

Specifically, the positive pressure phase of briefduration blast overpressure inflicts mechanical damage to the cochlea and its central pathways, initiating a cascade of pathological cellular processes, primarily activation of oxidative mechanism and neuroinflammation, that result in neurodegeneration and cell death in the cochlea and higher auditory centers of the brain, such as the cochlear nucleus, inferior colliculus, and auditory cortex.

Evidence demonstrates that even a single-blast TBI can cause lasting neurological changes—without clinical symptoms—that are considered a risk factor for late-onset neurodegenerative disease, such as chronic traumatic encephalopathy (brain degeneration as a result of repeated head trauma). Researchers are investigating a potential association between tinnitus and dementia, for which there is some preliminary evidence.

Blast overpressure-induced conditions often overlap with post-traumatic stress disorder and chronic traumatic encephalopathy. In veterans, hearing loss and tinnitus are consistently rated as the top two serviceconnected disabilities, according to the Veterans Benefits Administration Annual Benefits Report for Fiscal Year 2020. However, there are to date no Food and Drug Administration-approved medications for tinnitus.

In addition, there are no evidence-based guidelines available for the definitive diagnosis, or directed treatment, of blast-induced mTBI. This too is due to a poor understanding of the underlying pathology, as few studies have focused on the unique lesions associated with blast overpressure. As a result it is critical to characterize and consolidate our understanding of blast-induced pathology in the central auditory neuraxis, or the auditory pathway in the higher brain centers.

For our study published in the Journal of Neurotrauma 42

hearing health

hhf.org

in November 2021, my team and I characterized blastinduced auditory neurodegeneration in the chinchilla, a widely adopted animal model in auditory neuroscience.

Before delving into the molecular pathways underlying blast-induced pathology, we studied the structural changes using highly powerful 9.4T small animal diffusion tensor imaging (DTI) at the Center for Biomedical Imaging at the University at Buffalo.

Our investigation is the first of its kind to perform DTI in the chinchilla. DTI is a powerful technique for monitoring the response of the brain to trauma. In this study, the tissue microstructure of the auditory pathway was probed using a quantitative and noninvasive magnetic resonance DTI approach to collect images of water diffusion properties in auditory higher centers.

The water diffusion in tissues is highly sensitive to differences in the microstructural architecture of cellular membranes, making it a powerful method for detecting microscopic differences in tissue properties. Thus, the quantitative scalar DTI metrics are directly linked to the anatomic organization and microstructural features of white matter fiber tracts in the central auditory neuraxis.

This study’s findings are more generalizable to humans for two reasons: 1) The chinchilla has a hearing range and size of tissue microstructure similar to humans; and 2) the measures used to probe the pathophysiological changes (such as auditory brainstem response, or ABR, and neuroimaging) are commonly applied to humans as well.

Our results indicate that a single unilateral blast significantly impairs the structural and functional integrity at all levels of the central auditory neuraxis. Overall, it is evident that the cytoarchitecture, the structural integrity of brain tissue, is compromised at all levels, particularly at the cochlear nucleus and auditory cortex.

—Vijaya Prakash Krishnan Muthaiah, Ph.D.

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

research

Schematics of noise stimuli presented to mice.

With or Without Significant Hearing Loss, Older Mice Show Difficulty With Brain Processing Many older adults notice changes in their ability to understand speech, which can affect quality of life. These types of changes in auditory processing affect individuals with or without measurable hearing loss. To better distinguish between the effects of hearing loss and aging, my graduate student compared cortical responses in two strains of mice with differing levels of age-related hearing loss, reporting our results in Hearing Research in October 2021.

Previous studies had already demonstrated in animal models that noise-induced hearing loss results in increased central gain, which compensates for the lower levels of input, without any concomitant improvement in temporal processing. Until our study, it remained unclear whether the same was true in the case of presbycusis (age-related hearing loss), which develops over longer time frames. We tested temporal processing and central gain in mice with severe or mild hearing loss with age using electrophysiological responses from awake and freely moving mice.

We show that severe presbycusis leads to increased gain in the auditory cortex, but with reduced temporal fidelity. Data from the mice with more moderate hearing loss demonstrated age-related changes in temporal

processing without concomitant increase in cortical gain.

However, in the mice with moderate hearing loss, cortical temporal processing deficits were seen only when tested with more challenging sounds (shorter gaps and shallower modulation). This indicates that even mild hearing loss with aging may result in a decline in temporal processing under challenging conditions, such as environments with increased noise.

This has implications for treating age-related changes in auditory processing in humans. Sound amplification via hearing aids or cochlear implants may be insufficient; interventions may have to be multifaceted, involving amplification devices, behavioral training, and pharmacological approaches, as well as more detailed treatment plans that identify the most appropriate time points for each type of intervention.

Our data from mice is largely consistent with EEG studies of aging humans, suggesting that the EEG measures in mice can be used as translation-relevant biomarkers to test pharmacological intervention and behavioral training studies aimed at reducing agerelated auditory processing deficits in humans.

—Khaleel Razak, Ph.D. A 2009 and 2018 ERG scientist whose 2018 grant was generously funded by the General Grand Chapter Royal Arch Masons International, Khaleel Razak, Ph.D., is a psychology professor at the University of California, Riverside.

a publication of hearing health foundation

spring 2022

43

research

Ménière’s disease is a disorder of the inner ear consisting of intermittent, spontaneous episodes of vertigo (dizziness) in combination with other fluctuating ear symptoms including low-frequency sensorineural hearing loss, aural fullness, and tinnitus. The condition is associated with Prosper Ménière who in 1861 identified the inner ear labyrinth as a likely source for symptoms of a syndrome involving episodic vertigo and hearing loss. The cause of Ménière’s disease remains unclear.

Endolymphatic hydrops is a swelling of the endolymph (fluid) spaces that has been observed consistently in postmortem studies of patients with a history of Ménière’s disease, by examining their tissues and cells (known as histology). But hydrops can also occur in asymptomatic individuals and in association with other diseases, suggesting that while hydrops is associated with Ménière’s disease, it may not cause the disorder.

Since it was first discovered, Ménière’s disease has been a disorder managed primarily by otolaryngologists, also known as ear, nose, and throat specialists, or ENTs. As a result, surgical treatments have accompanied attempts at medical management. Inspired by patients’ sensations of ear fullness and later by the histologic findings of hydrops, surgeons began manipulating the membranous labyrinth to relieve episodes of vertigo while attempting to preserve hearing. The membranous labyrinth lies within the bony labyrinth and is filled with endolymph fluid.

Published in Frontiers in Neurology in December 2021, our review highlights this history of manipulation of the membranous labyrinth. The studies involving patients are uniformly retrospective, with some procedures performed first in animal models of endolymphatic hydrops.

These procedures indicate a rich history of innovation that parallels developments in otologic surgery. Lateral semicircular canal fenestration, the introduction of the operating microscope, the development of stapes surgery, and now increasing experience with semicircular canal plugging have each influenced procedures that aim to address the finding of endolymphatic hydrops.

The broad goals of these procedures are eliminating episodic vertigo while preserving hearing. Assessing the 44

hearing health

hhf.org

Surgical manipulations of the membranous labyrinth for treatment of Ménière’s disease: (A) This depiction of Femenic’s shunt in the lateral semicircular canal to relieve endolymphatic hydrops and vertigo episodes. Adapted with permission from Femenic. (B) This histological representation of endolymphatic hydrops in the cochlear duct and saccule, with a Fick sacculotomy needle placed through a fenestration in the stapes to drain excess endolymph. (C) This permanent tack placement in the stapes bone was intended to enable repeated decompression of the hydropic saccule in the Cody tack operation. (D) Two views of the cochleosacculotomy procedure, where a 90-degree pick is driven through the round window to rupture the cochlear duct and saccule and create a permanent fistula in the osseous spiral lamina. Adapted with permission from Schuknecht and Kinney et al. (E) Depiction of the Otic-Perotic shunt procedure, where a platinum tube is placed in the basilar membrane of the basal cochlea to enable decompression of the scala media. Adapted with permission from Pulec.

success of interventions is difficult due to the natural history of Ménière’s disease in which cessation of vertigo episodes over time is common. Also, whether the procedures improved endolymphatic hydrops specifically was unknown, since historically this could be assessed only by histology on postmortem specimens.

While hearing loss remains frequent following these procedures, many individuals who underwent procedures

illustration credit: copyright © 2021 kersbergen and ward, frontiers in neurology

A Historical Perspective on Surgery to Treat Ménière’s Disease

research

experienced relief from vertigo without hearing loss.

Again, this relief might have occurred despite the intervention, but other variables such as technical differences among surgeons and other patient-specific factors like the extent of hydrops may underlie undesirable complications and variable outcomes.

Advances in surgical technology—such as preoperative imaging, operative robotics, and improved magnification— will lead to new surgical approaches on the membranous labyrinth. Our hope is that this also will improve outcomes for patients with inner ear disorders like Ménière’s disease.

—Calvin J. Kersbergen and Bryan K. Ward, M.D.

Calvin J. Kersbergen is an M.D./Ph.D. candidate at Johns Hopkins University School of Medicine, where 2020 ERG scientist Bryan K. Ward, M.D. (left), is an assistant professor of otolaryngology–head and neck surgery. For more, see page 17.

When You Have to Think and Walk, What Happens to Your Balance?

Most activities of daily living require us to do two or more things at the same time, especially motor tasks (walking, standing, moving) with some form of a cognitive task (navigating, talking, decision-making). But it is not yet entirely clear what happens to balance performance in healthy individuals when they are also performing a cognitive task.

Several studies found that balance performance deteriorated (e.g., people are less stable and sway more) when attention needs to be divided. This is supported by an attentional resource-competition theory suggesting that our brain has some limited capacity and when we need to divide it—between control of movement and thinking—neither activity receives adequate attention, or one needs to be prioritized over the other.

Other studies found that balance improved when people allocated their attention to a cognitive task. The theory here is that balance control is largely controlled at lower, automatic brain levels while cognition requires high cortical

function. As a result, attempting to overly control balance is not ideal. If we use higher brain resources for cognition, then we let balance happen automatically, as it should.

In our study published in the Journal of Motor Behavior in December 2021, we investigated how these theories may work together. We hypothesized that some of the apparent discrepancy between these theories is related to how we measure balance. Twenty-three healthy young adults each stood in a heel-to-toe position while wearing an HTC Vive head-mounted display, via which they observed a display of stars on three walls that was static or dynamic.

On half of the trials, participants also counted backward in intervals of three from a three-digit number.

We found that the amount of sway—particularly a side-to-side directional path and velocity—significantly increased when participants were counting, particularly with dynamic visuals, while side-to-side variance (how concentrated was the sway around its mean) decreased.

When we analyzed the frequency components of the sway, we found that the increase in path was explained by an increase in high frequency (fast) movements and the decrease in variance was explained by a decrease in low frequency (slow) movements. Fast corrective movements are typically attributed to relying on somatosensory input for balance (joint position sense). Slower movements are associated with cortical control of movement.

We conclude that when adding a cognitive task (counting backward) to a challenging balance task (standing in a heel-to-toe position and observing a dynamic visual movement via the head-mounted display), young adults responded by increasing small corrective movements, and thus the overall path, while also reducing slow frequency movements, and thus the overall variance.

This suggests that both attentional resourcecompetition (the increased challenge to maintain position with the cognitive task) as well as a switch to a more automatic, somatosensory-based control of the stance took place simultaneously. —Anat V. Lubetzky, Ph.D.

A 2019 ERG scientist, Anat V. Lubetzky, Ph.D., is an associate professor at New York University’s department of physical therapy.

For references to all the papers cited, see hhf.org/spring2022-references.

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

spring 2022

45

tinnitus

life

in

spired

A Numbers Game

w

Harnessing the power of patients who suffer from tinnitus and who share their experience with various treatments can lead to improved outcomes. By Hazel Goedhart More than four years ago now, I went to bed one night and noticed a loud piercing sound that seemed to come from my right ear. I didn’t panic right away, but a few days later I could not control my anxiety and ended up taking a few months of sick leave from my job.

During the first week of this ordeal, I discovered the Tinnitus Talk support forum, where I read many stories from others suffering the same fate. It made me feel less alone and confirmed that I was not crazy for being so distressed about this phantom sound. I focused mostly on Tinnitus Talk’s Success section, where I was encouraged to hear from others who had, over time—even though their journeys were often hard and full of setbacks— learned to live with their tinnitus.

I also got curious about tinnitus research due to the dedicated Research News section.

I learned that little was known about the mechanisms causing tinnitus, and treatments were hard to test because they seemed to have very different effects on different people.

Researchers call this heterogeneity, and it simply means that your tinnitus is likely different from mine.

A couple of months later, when I was starting to feel better, I reached out to the managers of Tinnitus Talk to ask about volunteering opportunities. I understood that even though I was on a path of acceptance and had started to believe I could live a relatively normal life with tinnitus, not everyone suffering from tinnitus might be so lucky. I had read many stories that were all different. Some people got habituated but then had a setback due to a traumatic event. Others improved but never felt quite right. Most unfortunate of course are the ones who suffer for years or decades without relief. I wanted to do whatever I could to help them.

I received a lovely response from the Tinnitus Talk founder, Markku, and after a few Skype calls learned a lot more about the nonprofit organization behind the forum, Tinnitus Hub. Run by just a few volunteers, I was amazed at what they had achieved. Not only were they running the forum, but they were also making contributions to tinnitus research through data collection. That really excited me! Knowing how much more there is to learn about tinnitus and its different forms, I thought surely a global online platform would be a great way of gathering large amounts of data. I was hooked and kept volunteering, up to and including today. I’ve taken on the role of director, next to my day job at a financial services firm.

Academic research is a game of patience. A paper we coauthored was published in Frontiers in Neurology in January 2022, for which we gathered the data about five years ago. The data came from two surveys we conducted, with a total of more than 11,000 respondents.

It’s important to keep in mind that this sample probably consists largely of people who were distressed enough about their tinnitus to seek help online—in other words, it’s not a random sample of people with tinnitus. But instead of viewing this as a potential obstacle to drawing useful conclusions, it’s helpful to remember this is also the group who

46

hearing health

hhf.org

ork

tinnitus

Our survey showed people are more likely to experience higher tinnitus loudness, annoyance, and awareness if they are female or have a head or neck injury, Ménière’s disease, headaches, fullness in the ears, or any type of hearing loss. When it comes to tinnitus severity, a complex interplay of factors may be at work. are suffering the most—and who researchers and doctors should want to study in order to help them.

Our first survey in 2016 explored what kinds of treatments people had tried, including home remedies, and the effects. Our data showed 58 percent of respondents had tried treatment(s), with over one-third of this group having tried more than three different treatments each. The most frequently tried treatments were self-administered sound therapy (31.1 percent), supplements/herbal medicines (23.1 percent), antidepressants (15.6 percent), and hearing aids (13.6 percent).

Regrettably, on average, respondents reported they did not experience improvement from these treatments.

The most effective treatment was the medication retigabine, with 28.3 percent of those who tried it experiencing a “big improvement.” Retigabine was approved in the European Union and United States as an epilepsy drug, and sometimes prescribed off-label for tinnitus. However, due to severe side effects, it was pulled off the market for all use in 2017. (Incidentally, Thanos Tzounopoulos, Ph.D., of the Pittsburgh Hearing Research Center, is working on a revamped version of the drug specifically targeted at tinnitus.)

Our second survey in 2017 looked at physical and psychological factors associated with tinnitus. It showed that people are more likely to experience higher tinnitus loudness, annoyance, and awareness if they are female or have a head or neck injury, Ménière’s disease, headaches, fullness in the ears, or any type of hearing loss. This means that when it comes to tinnitus severity, a complex interplay of factors may be at work.

Most of the current knowledge about tinnitus and treatment outcomes comes from samples of patients visiting healthcare centers or taking part in clinical trials. Sample sizes are generally modest and do not necessarily represent the people who most need help with their tinnitus.

On the other hand, our dataset shows high numbers of people who struggle with tinnitus and are trying out

conventional or nonconventional therapies that often have no proven benefit; indeed, most of them do not experience improvement. This underscores the need for finding effective, personalized, and accessible treatments for people suffering from tinnitus, which will require much larger datasets than have so far been gathered.

Future research should investigate which factors explain the effects of treatment on individuals. As our 2016 survey shows, treatment outcomes can vary greatly between people. In fact, that survey formed the basis of another academic paper that we coauthored in Frontiers in Public Health in 2019. It showed that certain personal and tinnitus characteristics can to some degree predict treatment outcomes. This means that there could be “subtypes” of people with tinnitus who respond to certain types of therapy while others may require a different therapy.

My tinnitus these days is manageable, although it still bothers me during moments of stress. But my goal of helping to find a cure has not changed. Our surveys show the promise of large datasets and the power of online communities coming together for research. So, my dream is to crack the case of tinnitus through big data.

Hazel Goedhart is a director and the chief strategist for the U.K.-based organization Tinnitus Hub, founded by Markku Vesala.

For more, see tinnitushub.com and tinnitustalk.com. For references including the papers mentioned, see hhf.org/spring2022-references.

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

Support our research: hhf.org/donate.

a publication of hearing health foundation

spring 2022

47

advertisement

This sponsored page shows current trends in technology.

Tech Solutions

CapTel® Captioned Telephone

Never Miss a Word With Olelo Captioned Calls

Enjoy the phone again with confidence! Ideal for people with hearing loss, the CapTel® Captioned Telephone shows captions of every word the caller says over the phone.

You can listen to the caller, and read the written captions in the CapTel® display screen. Only CapTel® gives you several models to choose from, including contemporary touch-screen options and traditional telephone styles. All CapTel® phones include a large display screen, adjustable font sizes and colors, and a builtin answering machine that shows captions of your messages. CapTel® gives you the confidence to reconnect over the phone, knowing you won’t miss a word! Visit CapTel.com.

Powered by advanced speech recognition, Olelo is a next-generation captioned phone service designed for maximum accuracy and privacy in an easy-to-use mobile app.

Captions each spoken word in real time.

Fully automated captioning protects your privacy.

Voicemail, saved transcripts, Bluetooth, and more.

It’s free! Olelo is an FCC-certified service paid for by a federally administered fund.

Try Olelo today! Install takes just minutes! Visit getolelo.com.

• • • •

These featured products are paid advertisements. To advertise in Hearing Health magazine, email hello@glmcommunications.com or call 212.929.1300.

48

hearing health

hhf.org

marketplace

Supporters of Hearing Health Captioned Telephone

Everybody’s health tells a story.

What’s yours? Help researchers understand how genes, lifestyle, and environment influence health and well-being. Make new discoveries to advance health research for Veterans and for all of us.

CapTel captioned telephone shows word-for-word captions of everything a caller says over the phone. Like captions on TV—for your phone. Helps people with hearing loss enjoy phone conversations, confident they’ll catch every word.

When it comes to understanding what’s said on the phone, Hamilton CapTel makes all the difference.

Reliable and accurate captions ensure clarity on every call— eliminating the frustration even a simple phone call can make for people with hearing loss.

veterans.joinallofus.org 833.805.0426

captel.com 800.233.9130

hamiltoncaptel.com/hhm422 877.455.4227

page 7

pages 2, 48

page 52

InnoCaption is the only mobile app that offers real-time captioning of phone calls through live stenographers and automated speech recognition software—the choice is yours. Our technology makes phone calls easy and accessible!

The Les Paul Foundation inspires innovative and creative thinking by sharing the legacy of Les Paul through support of music education, recording, innovation, and medical research related to hearing.

Olelo Captioned Calls is an easyto-use app that produces accurate captioning in less than a second, keeps conversations private by using automated speech recognition, and can be used anywhere service or WiFi is available.

innocaption.com

lespaulfoundation.org 212.687.2929

olelophone.com

page 5

page 16

page 48

Picture Your Company Logo Here Hearing Health Foundation’s Emerging Research Grants (ERG) fund innovative approaches toward understanding, preventing, and treating hearing and balance conditions.

Hearing Health Foundation’s Hearing Restoration Project is the first international research consortium investigating how to regenerate inner ear sensory hair cells in humans to eventually restore hearing.

All Hearing Health advertisers and other partners are featured on this Marketplace page at no additional charge. Please join our community of supporters.

hhf.org/erg

hhf.org/hrp

212.929.1300

pages 14–17, 26–27, 41–45, 50

pages 14–15, 38–41 a publication of hearing health foundation

spring 2022

49

meet the researcher

hearing health foundation

Meet the Researcher

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

Manoj Kumar, Ph.D. University of Pittsburgh

Kumar received his doctorate in neuroscience and pharmacology from West Virginia University and completed his postdoctoral research in the department of otolaryngology at the University of Pittsburgh, where he is currently a research assistant professor. Kumar’s 2022 Emerging Research Grant is generously funded by the General Grand Chapter Royal Arch Masons International. the astonishing power of the brain to produce perceptions in the absence of external stimuli, like hallucinations or tinnitus, has always intrigued me. My study of the cortical mechanisms underlying sensory information processing is the direct result of that fascination. Investigating this complex phenomenon requires an understanding of neurobiological events at many levels, like the comprehension of neurotransmitter signaling mechanisms, figuring out the biophysical workings of ion channels, and mapping the processing of sensory information. i am employing this multidisciplinary approach to uncover the cortical mechanisms of sound processing in both health and disease. Throughout my career, from undergrad right through to postdoc, I’ve sought more opportunities to better understand these processes. I hope I can always turn out good science. Moving forward, in five years, I hope to be writing my R01 renewal. In 10 years, my goal is to become a tenured professor. i myself find it difficult to concentrate on conversations, especially in noisy environments. It has only made me realize how common hearing loss is, and emphasizes the importance of much-needed treatment options to cure or prevent hearing loss.

a highlight of my career so far is that I developed RL_81, the most selective and potent KCNQ2/3 channel activator to prevent the development of tinnitus in mice.

This is a huge leap forward in our understanding of hyperexcitability disorders, and one step closer to a cure for tinnitus.

I grew up playing cricket in India. Still a favorite pastime, I play in the Pittsburgh Cricket League every season. Another hobby is cooking, which I find very soothing. To me, cooking is like a lab experiment: If it is not thought through, it won’t come out well. I like to have the final picture of the dish in my head first, and plan out each step from there. My specialties are chicken curry and kheer, an Indian dessert. the first flight I ever took was when I left India for the United States to attend graduate school. Now one of my goals is to travel the world with my wife.

—Heather Chambers Manoj Kumar, Ph.D., is generously funded by the General Grand Chapter Royal Arch Masons International. We thank them for their support of studies that will increase our understanding of the mechanisms, causes, diagnosis, and treatments of central auditory processing disorders.

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.

50

hearing health

hhf.org

YOU CAN MAKE A DIFFERENCE NOW announcing a planned giving matching challenge

Ann Pruitt has named HHF in her estate plans.

Planned giving, also called estate or legacy giving, means a gift that your favorite charity receives upon your passing. It is a gift for the future.

A generous, anonymous donor has launched a challenge that will match your planned gift now.

This enables Hearing Health Foundation to continue funding the life-changing science that benefits the millions of people who live with hearing and balance challenges.

Your planned gift will be matched when you make a bequest to HHF or name us as a partial beneficiary of a retirement fund or life insurance policy.

Here’s how the matching challenge works: » » »

For any planned gift of up to $10,000, HHF receives a match of $1,000.

For any planned gift of $10,000 or more, HHF receives a match of $10,000.

For larger planned gifts, HHF receives a match of $100,000.

Please email Harriet Hessam at hhessam@hhf.org to let us know about your planned gift or for more information.

You can make a difference NOW as well as in the FUTURE.

Don’t have a will? Create one for free with our partner FreeWill at freewill.com/hhf.

h e a ri n g h e alt h fo u ndation

Hamilton® CapTel® 840i

Cisco® 8851

Hamilton® Mobile CapTel®

Hamilton® CapTel® 2400i

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

Explore all of the Hamilton CapTel solutions today!

HamiltonCapTel.com/HHM422 031422 FEDERAL LAW PROHIBITS ANYONE BUT REGISTERED USERS WITH HEARING LOSS FROM USING INTERNET PROTOCOL (IP) CAPTIONED TELEPHONES WITH THE CAPTIONS TURNED ON. IP Captioned Telephone Service may use a live operator. The operator generates captions of what the other party to the call says. These captions are then sent to your phone. There is a cost for each minute of captions generated, paid from a federally administered fund. To learn more, visit fcc.gov. Voice and data plans may be required when using Hamilton CapTel on a smartphone or tablet. Hamilton CapTel may be used to make 911 calls, but may not function the same as traditional 911 services. For more information about the benefits and limitations of Hamilton CapTel and Emergency 911 calling, visit HamiltonCapTel.com/911. Courtesy of Cisco Systems, Inc. Unauthorized use not permitted. Third-party trademarks mentioned are the property of their respective owners. Third-party charges may apply: the Hamilton CapTel phone requires telephone service and high-speed Internet access. Wi-Fi capable. CapTel is a registered trademark of Ultratec, Inc. Copyright © 2022 Hamilton Relay. Hamilton is a registered trademark of Nedelco, Inc. d/b/a/ Hamilton Telecommunications.

52

hearing health

hhf.org