Spring 2020 A Publication of Hearing Health Foundation hhf.org
The Pediatrics Issue Growing up with— but not defined by— hearing conditions
h e a ri n g h e alt h fo u n dation
6 Ways to Make an Impact Today and Tomorrow You can make a meaningful difference in hearing loss research. Whichever method below you choose, every gift to Hearing Health Foundation (HHF) counts.
The De Francescos named HHF in their estate plans.
Check or credit card gifts online or by mail are easy and immediate. For more of an impact, schedule a monthly gift that helps sustain research without interruption.
If you are in possession of life insurance policies that you no longer need, you can designate HHF as the beneficiary.
Donating appreciated stock can reduce your tax bill. You receive a charitable tax deduction for the full value of the stock, and avoid paying taxes on the stock as it appreciates.
IRA distributions that begin when you turn 70 1/2 can be taxed as income, but if you choose to donate them to HHF, you avoid the penalty.
A charitable bequest in your will can be a more substantial gift if you are unable to donate today. If you do not have a will, create one for free at freewill.com/hhf.
Retirement plan benefits left to heirs are more highly taxed than other assets. Make a meaningful gift to HHF instead, leaving lower-taxed assets to loved ones.
This publication is made possible through the generous support of readers like you and our advertisers. To learn more, visit hhf.org/how-to-help, email development@hhf.org, or call 212.257.6140.
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The mission of Hearing Health Foundation (HHF) is to prevent and cure hearing loss and tinnitus through groundbreaking research and to promote hearing health. As a scientific organization, we take seriously the threat COVID-19 poses to all of us. As this magazine goes to print in early April, the U.S. and the world are grappling with the spread of the pandemic, an unprecedented global event. While our scientists continue with the work they are able to do remotely, we sincerely thank the medical and research organizations here and abroad that are mobilizing to effectively detect, treat, and prevent the spread of COVID-19 under the most trying of conditions.
Spring 2020: The Pediatrics Issue When a child or parent has a hearing loss, everyone in the family is affected, from parents and children to grandparents and siblings—and in the end, each of us is stronger for it.
Timothy Higdon, HHF CEO
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HEARING HEALTH The Pediatrics Issue
Publisher Timothy
Spring 2020, Volume 36, Number 2
Editor Yishane
Lee
Art Director Robin Senior Editors
Features 10 Family Voices Double Happiness. Lacy Hernandez, Julio James Hernandez Jr., Riley Hernandez 16 Living With Hearing Loss How to Parent When You Have a Hearing Loss. Shari Eberts 18 Family Voices The Silent Mockingbird. Monica Chiarappi. Super Kena. Becky Cymbaluk 24 Hearing Health Moth Mimicry. Ananya Atri, Lara Rodriguez, Medha Sri, Hamsika Vedavinayagam, Amita Vellal 26 Meet the Fundraiser Listening to the Story. Joe Mussomeli. A Family Gives Back. Lauren McGrath 28 Advocacy This 10-Year-Old Inspired Hearing Aid Legislation. Jennifer Rios. How One Kid Raised Thousands for People in Need of Hearing Aids. Katie Marler
32 Family Voices Riding Strong. Jacob Landis 36 Managing Hearing Loss Surf Therapy Makes Waves. Sean Swentek 38 Workplace The Power of Parents’ Well-Being. Joanne Travers. How to Support Those Living With Hearing Loss. Tony Hollenback
40 Research Filling in the Gaps. Peter G. Barr-Gillespie, Ph.D. 42 Research Data Made Visual. Making Connections. Christopher Geissler, Ph.D. 46 Research ERG Alumni in the News. 48 Hearing Aids 101 Can I Get My Hearing Tested Online? Rebecca M. Lewis, Au.D., Ph.D., CCC-A
Departments
Sponsored
06 HHF News
37 Advertisement Tech Solutions.
50 Meet the Researcher Kristi Hendrickson, Ph.D., CCC-SLP General Grand Chapter Royal Arch Masons International
49 Marketplace
Higdon, CEO Kidder
Amy Gross, Lauren McGrath
Medical Director David Staff Writer Kathi
S. Haynes, M.D.
Mestayer
Advertising
hello@glmcommunications.com, 212.929.1300 Editorial Committee
Peter G. Barr-Gillespie, Ph.D. Judy R. Dubno, 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. Ruth Anne Eatock, Ph.D. Jason Frank Jay Grushkin Roger M. Harris David S. Haynes, M.D. Elizabeth Keithley, Ph.D. Cary Kopczynski Anil K. Lalwani, M.D. Michael C. Nolan Paul E. Orlin Robert V. Shannon, Ph.D. Hearing Health Foundation 575 Eighth Avenue, Suite 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: 0888-2517) is published four times annually by Hearing Health Foundation. Copyright 2020, 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.
Cover In this 2005 photo, twins Riley (left) and James Hernandez show the elastic cords that helped keep track of their hearing aids if they fell out.
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Hearing Health Foundation and Hearing Health magazine do not endorse any product or service shown as paid advertisements. While we make every effort to publish accurate information, we are not responsible for the accuracy of information therein. See hhf.org/ad-policy.
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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 intendedaexclusively for individuals with hearing health loss. CapTel®foundation is a registered trademark of Ultratec, publication of hearing spring 2020 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)
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NEWS
HHF Welcomes Two New Board Members Cary Kopczynski (far left) and Jay Grushkin were recently appointed to Hearing Health Foundation’s Board of Directors.
Hearing Health Foundation (HHF) is pleased to announce that Cary Kopczynski and Jay Grushkin joined our Board of Directors this spring. Kopczynski is the founding principal and CEO of Cary Kopczynski & Company (CKC), an award-winning structural engineering firm based in Seattle with branch offices in Chicago and Los Angeles. CKC designs major urban building structures throughout the United States and internationally. Kopczynski discovered HHF a few years ago through his own research and quickly became motivated to contribute time and money to the foundation. “In my searches for worthwhile organizations, HHF continually came up as the source of leading-edge hearing initiatives,” he says. Grushkin is a partner in the New York City office of Milbank LLP, a premier law firm established in 1886 with 12 offices worldwide including Tokyo, where he previously served as a managing partner. He is a member of the firm’s alternative investments practice. Grushkin previously served for many years as the senior hiring partner for Milbank and now heads its technology committee. During 37 years of practice, his clients have included financial institutions, investment advisers, investment
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banks, airlines, and technology and telecommunications companies. “Since first meeting with HHF CEO Timothy Higdon earlier this year, I’ve become engrossed by the innovative research the foundation is funding, and this research hits close to home,” says Grushkin of his interest in serving on the board. Both Kopczynski and Grushkin live with tinnitus. For Kopczynski, hearing and balance conditions run in the family; his mother has a hearing loss and wears a cochlear implant. “I look forward to playing a role in advancing future treatments and cures for hearing and balance related disorders,” Kopczynski says. Kopczynski is a recognized expert in the design of major urban building structures. He frequently speaks at conventions and trade association events and has authored numerous papers on engineering design, building construction, and the importance of embracing innovation in the construction industry. His firm has won over 70 regional, national, and international design awards, and he has twice been selected by McGraw-Hill’s ENR Magazine as a Top 25 Newsmaker for his pioneering role in advancing the use of highstrength steel in major buildings. In 2021, Kopczynski will become the president of the American Concrete Institute, an international organization with more than 30,000 members that develops design and construction policy for concrete
buildings, bridges, and other structures. He is also a longtime member of Rotary International and a past president of the Bellevue Breakfast Rotary Club. Grushkin has been identified as a leading lawyer by three respected ranking agencies: Chambers and Partners, ILFR 1000, and The Legal 500. He frequently speaks at legal conferences throughout the world and his expertise has been highlighted by Bloomberg, CNBC, and The New York Times. Outside of Milbank, Grushkin serves on the Board of Advisors to Vanderbilt Law School. For his entire career, Grushkin has provided pro bono legal services to worthy causes including special education and human rights. He looks forward to service on the HHF Board and to promoting and facilitating research into treatments for tinnitus and other hearing conditions. “It is a great pleasure to welcome both Cary and Jay to the Board of Directors,” Higdon says. “Each has demonstrated exceptional leadership abilities in their careers and are enthusiastic and well-informed advocates of HHF. The Board, scientific advisory bodies, staff, and I are very grateful for their commitment and look forward to working with them.” —Lauren McGrath
Support our research: hhf.org/donate
Create Your Legacy
The De Francescos named HHF in their estate plans.
HHF has partnered with FreeWill to give all of our supporters the opportunity to include hearing loss research in their legacy plans. Giving options include bequests, qualified charitable distributions, and stocks. These thoughtful approaches offer HHF supporters creative, flexible strategies to pursue financial goals while supporting hearing loss research.
Designate HHF as a Beneficiary in Your Will You can talk to your attorney about adding HHF to your will. If you do not have one, FreeWill can help you create a legally valid will at no cost to you, in under 20 minutes. Get started at freewill.com/hhf. Make a Qualified Charitable Distribution From Your 401K Distributions from your Individual Retirement Account (IRA) typically count as income for tax purposes. An IRA charitable rollover, also called a Qualified Charitable Distribution, is an exception to the tax penalty. Individuals ages 70 1/2 years old and older can give to charities without counting the distribution as income. It’s the smartest way to make a high-impact gift to HHF while saving on your taxes. Get started at freewill.com/qcd/hhf. Donate Appreciated Stock If you donate appreciated stock directly to charity, you do not incur a capital gains tax. And when you give a gift of appreciated stock, it’s both fully tax-deductible and over 20 percent more valuable than if you’d sold it and then donated the after-tax earnings. Our free tool can help you make this tax-savvy gift in under 10 minutes. Get started at freewill.com/stocks/hhf. a publication of hearing health foundation
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hhf news
h e ar i n g h ealth foundation
Emerging Research Grants Applications Rise 62 Percent After introducing changes to the structure of the Emerging Research Grants program—including increasing the maximum annual funding per project to $50,000 from $30,000, and making the grants renewable for a second year—HHF realized a 62 percent increase in the number of applications compared with last year, with all topic areas of the grant program well represented. In addition, HHF has continued to improve its advertising of research funding opportunities via mail, email, and “science Twitter.” We also maintained our engagement with our large networks of researchers and promoted funding opportunities at the annual Association
for Research in Otolaryngology (ARO) conference, held in California in January. (See page 45 for more on the ARO.) Reviewers for the first round of peer review are assigned, and the successive rounds of review—by the Scientific Review Committee and then by the Council of Scientific Trustees—are expected to be complete by early summer. In spite of the uncertainties that COVID-19 has created, HHF is continuing to operate fully and expects the grant cycles to continue as planned, with an announcement of the 2020–21 Emerging Research Grants during the summer and projects beginning October 1, 2020. —Christopher Geissler, Ph.D.
HHF’s Board Chair Participates in Congressional Hearing Research Program In January 2020, U.S. Army Col. John Dillard (Ret.) participated in the evaluation of research applications submitted to the Hearing Restoration Research Program (HRRP), part of the Congressionally Directed Medical Research Programs (CDMRP). As a consumer reviewer, Dillard, along with prominent scientists, was a full voting member at meetings to help determine how the $10 million appropriated by Congress for fiscal year 2019 will be spent on hearing restoration research. Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. “As a leader of Hearing Health Foundation, the largest nonprofit funder of hearing loss and 8
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tinnitus research in the nation, I am always eager to learn about other approaches to treatments and cures,” says Dillard, who has tinnitus as a result of his service. “The breadth of the HRRP’s research activity was impressive, and I was pleased to meet with many new scientists in the hearing and balance space.” Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of research applications since fiscal year 2017. U.S. Army Col. Stephen J. Dalal, the director of the CDMRP, expressed his appreciation for the consumer advocate perspective during the scientific review sessions. “Consumer advocates are an integral part of the CDMRP’s scientific review process. They provide a key ingredient to the review process—the patient’s perspective— which is real and urgent,” Dalal says.
“The collaboration of consumer advocates alongside the scientists’ subject matter expertise is a truly unique collaboration that is difficult to find in most medical research programs.” The most recent data from the Veterans Benefits Administration, Department of Veterans Affairs, indicates that there are 1.1 million veterans with service-connected disability due to hearing loss. The HRRP will fund innovative research that has the potential to maximize operational effectiveness, medical readiness, and quality of life for service members, veterans, and others living with significant auditory system injuries. —Jennie Mettert-Young
Support our research: hhf.org/donate
photo credit: amanda janesick, ph.d., in the lab of hrp member stefan heller, ph.d.
Hearing Health Foundation (HHF) improves the lives of people with hearing loss and related conditions by funding research, connecting researchers, publicizing new findings, raising awareness about hearing loss, and promoting hearing health. Complex and interconnected, hearing loss and its variants impact speech processing, brain function, cognition, interpersonal relationships, psychological well-being, and quality of life. HHF’s advances in one aspect or disease-specific area of hearing often benefit many others, creating pathways to better prevention methods, treatments, and cures. » Fundamental studies of inner ear hair cell function
may shed light on these mechanisms: how hearing loss occurs, how balance is disturbed, how tinnitus is generated, how the brain processes sound and speech, and how cognitive decline accelerates. As a consequence, advancing knowledge in one area of research benefits many related areas and promotes novel therapies.
» Breakthroughs in understanding sensorineural
hearing loss also enlighten studies on tinnitus, hyperacusis, and auditory processing disorders because the biological systems that are involved— the inner ear, the brainstem, and parts of the brain such as the auditory cortex—are shared.
» Developing new means to deliver therapeutic drugs
to the inner ear across the blood-labyrinth barrier may lead to discoveries about that barrier that help scientists prevent damage to hearing as a side effect of other drugs (ototoxicity) or of infection.
» Work on the role of neural circuits in the auditory
processing of speech may improve our understanding of hyperacusis, as these same neural circuits play a role in the brain’s sensitivity to sound.
» Discovering how to regenerate inner ear hair cells
to restore hearing may also help medical researchers and clinicians treat tinnitus, which is often caused by these hair cells “mis-signaling” the brain. a publication of hearing health foundation
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18 Years Later
Double Happiness
Diagnosed at birth with hearing loss, twin boys thrive. By Lacy Hernandez
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The year was 2001. Thankfully, newborn hearing screenings had just taken effect in Georgia that January. Our twins, James and Riley, were born on August 23. They did not pass this initial hearing screen, so auditory brainstem response (ABR) tests were administered in the hospital. Two weeks after a second ABR with our audiologist, they were both diagnosed with moderate bilateral sensorineural hearing loss. Hearing this news felt like the wind had just been knocked out of me! Luckily, my husband Julio and I had a thorough and caring audiologist who fit the boys with Phonak hearing aids at 3 months of age. My mother-in-law accompanied me to the fitting appointment for support. As our audiologist proceeded to go over all the instructions, my eyes started to water and my mind began to race. Her voice began to sound like the teacher’s voice in Charlie Brown cartoons: “Wa-waa-wa-wa-waaa.” I couldn’t focus because the worry started to take over. Would James and Riley ever be able to play sports? Would they have to attend a special school? Would their speech be delayed? So many questions started whizzing through my mind. At that moment, I had to take a deep breath hhf.org
and accept that wearing hearing aids would be the “new normal” for our twin baby boys, and that I would be their advocate until they could speak for themselves.
Nonstop Narration
The infant years seemed pretty overwhelming at times. Keeping the hearing aids in the boys’ ears—they were forever falling out or being pulled out or whistling from feedback—turned into a daily challenge. My goal was to keep the hearing aids in their ears for all of their waking hours to maximize their intake of speech and language. James and Riley qualified for therapy services, and an early intervention therapist came to our house every Saturday to teach me how to work with them using auditory verbal therapy. She encouraged me to emulate her session on my own every day for at least one hour. So, after breakfast, while the boys were still sitting in their highchairs, I would reach for the small plastic toys I had accumulated and begin their lesson. The goal was to provide them with speech intake to reinforce voice inflection, speech patterns, and new vocabulary, all in a quiet environment. I was challenged to narrate daily life to them all day long. Babies and toddlers with hearing loss benefit from hearing more spoken language than typical hearing children in order to hit developmental milestones at the appropriate rate. So, constantly talking to my sons—explaining our daily routine, stating the obvious, and discussing everything I
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could think of with them—became my everyday way of life. When James and Riley were 2, Julio and I found out that we had been blessed with another pregnancy; this time, a singleton. A maternal-fetal specialist followed my pregnancy, since I was over 35. We had never determined the cause of our twins’ hearing loss, even with genetic testing done when our boys were infants. So, the thought of having another child with a hearing loss was a bit scary, but we knew we could handle whatever came along. In October 2004 Virginia was born and passed the newborn hearing test. She had an ABR when she turned 1 month old, which she also passed. After learning so much about the benefits of auditory verbal training with our boys, it had become second nature for Julio and me to narrate daily happenings, and we frequently read aloud to Virginia. We attribute her love for reading partly to our intentional focus on auditory input at an early age. Having three kids ages 3 years and younger was pretty busy. The boys continued speech therapy and auditory verbal therapy until they were 4.
A Growing Family
When the boys were toddlers, I wasn’t prepared for the frequent visits to see our audiologist for earmold fittings every two weeks in order to keep up with the rate of their growing ears. Sometimes, the earmolds would be too small by the time I received the most recently fit sets in the mail! We developed a rapport with the salesman at a place we called “the little store” just outside our ENT office. He could predict our purchases of two Ring Pops, four Tootsie Rolls (two for Mom), and two Reese’s Peanut Butter Cups as a treat after each visit. Ear infections are more frequent in babies with hearing aids because fluid becomes trapped in the middle ear due to the earmold. We learned tricks such as earplugs for swimming and keeping a supply of
Above: Julio Hernandez with Riley (left) and James, about age 4. Opposite page: The Hernandez family (from left): Julio, Riley, James, Lacy, Virginia, and Lily.
During their impressionable middle school years, James and Riley no longer chose brightly colored earmolds corresponding to their favorite football teams, but rather grew their hair a bit longer to conceal them. Tucking hearing aid batteries into car compartments, backpacks, sports bags, kitchen drawers, and my purse became second nature to our family. Julio and the girls have vivid memories of frantically searching for a hearing aid in the sand after it fell out of a beach chair. We even once found a hearing aid hung on our family Christmas tree when the boys were 2 years old! a publication of hearing health foundation
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prescription ear drops on hand to relieve ear pain and infections. The boys had multiple surgeries each to put in or take out ear tubes, and they each had an adenoidectomy before kindergarten to help with the ear infections. Julio was instrumental in helping with managing medications, scheduling follow-up ENT visits, and acting as the family cook, one of his favorite pastimes. Virginia enjoyed tagging along to the ENT visits because she would get first pick of the stickers and occasionally would be granted permission to choose two stickers, a highlight for her. In August 2006, when James and Riley turned 5 and Virginia was 2, Julio and I shared with them the wonderful news that they would have another sibling joining the family in the New Year. James, Riley, and Virginia were excited to welcome their sister Lily into the world in January 2007. Just like her sister, Lily passed the hearing screen shortly after birth. Julio and I followed up with an ABR when she turned 1 month, which resulted in Lily being diagnosed as a typical hearing child. Now with four children ages 5 and under things really got hectic and loud, to say the least.
School Years
When searching for an elementary school, we were lucky to find one with a small class size. James and Riley started mainstream kindergarten with just 12 students per class. I developed a standard repertoire of information to share with the teachers and nurse before the start of school, explaining the boys’ degree of hearing loss and information about their hearing aids and the FM system they used. Before fourth grade at a new school, the boys made a video, a mini Hearing Loss 101 for their new teachers and classmates. They never shied away from confidently answering questions from other kids about “those things behind your ears.” During their impressionable middle school years, James and Riley no longer chose brightly colored earmolds corresponding to their favorite football teams, but rather grew their hair a bit longer to conceal them. Tucking hearing aid batteries into car compartments, backpacks, sports bags, kitchen drawers, and my purse became second nature to our family. Julio and the girls have vivid memories of frantically searching for a hearing aid in the sand after it fell out of a beach chair. We even once found a hearing aid hung on our family Christmas tree when the boys were 2 years old! The girls also have grown accustomed to living with brothers with hearing loss. They are used to speaking louder at the beach or pool, or in any situation where the boys are not able to wear their hearing aids. 12
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This well-loved photo shows Riley (left) and James at around age 2.
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As recommended by our ENT, James and Riley will undergo further genetic testing this spring, to potentially help them learn more about new genetic discoveries that have arisen since they were last tested, 18 years ago. As we have every year for almost two decades, we paid a visit to “the little store” this year at our yearly hearing test and hearing aid check. Our family is also preparing for the boys’ high school graduation this spring. We are proud of their hard work and dedication to their studies, jobs, and other activities. James and Riley each persevered when things got tough and have become stronger individuals. They both would like to help others navigate their hearing loss journeys. James plans to study business at Wharton at the University of Pennsylvania and hopes to minor in deaf studies. Riley has decided to attend the University of Southern California as a Dean’s Scholar. College will be a new journey for both of them and they will face new challenges, but we are certain that they are prepared for what is ahead. They have learned to advocate for themselves, to manage, and to thrive. Now high school seniors, Riley (left) and James.
Lacy Hernandez lives with her family in Georgia.
Speaking Up, and Often By Julio James Hernandez Jr.
On the first day of fourth grade, I stood at the front of the classroom, with 80 pairs of eyes staring me down. I told my peers that I (and my twin brother) had been diagnosed with moderate hearing loss shortly after birth, which was why we wore hearing aids. I showed them my FM system, a large bulky microphone that transmitted sound directly from our teacher’s mouth to my hearing aids. As the kids curiously looked at it, I ignored the looks of sympathy on my teachers’ faces and spoke eloquently. My voice had been trained to talk to the hearing world through years of speech therapy, and I was not afraid to use it. Weeks earlier, the principal had suggested I tell my grade about my hearing loss before my brother and I joined the school as new students. She said we would
be the school’s first students with hearing loss. I didn’t understand why I had to explain our identity, but I would soon love being a trailblazing advocate for our family and the larger hearing loss community. Part of being a trailblazer means facing obstacles. When I got to middle school, I worried about the stigma of hearing loss. Because of this, I stopped using my FM system, I switched the colors of my hearing aids from bright blue to transparent, and I frequently laughed at jokes I didn’t even hear. In high school, I tried my best to sit toward the front of the classroom to actively listen to the teacher. I asked many questions about content, which made the teachers repeat necessary information I missed—and which often made kids roll their eyes at me. At home, I frequently reread the textbook and studied with friends over video chat to learn information a publication of hearing health foundation
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Before my brother and I joined our new school as fourth grade students, the principal had suggested I tell our grade about our hearing loss. She said we would be the school’s first students with hearing loss. I didn’t understand why I had to explain our identity, but I would soon love being a trailblazing advocate for our family and the larger hearing loss community.
The family welcomed their first baby sister in 2004, when the boys were toddlers and used clips with yellow elastic to prevent losing their hearing aids if they came out of an ear.
that I didn’t hear in class. Although many question the abilities of kids with hearing loss, I have always tried to exemplify that we can be leaders in our communities. By excelling in academics as an AP Scholar With Honor, achieving Eagle Scout rank, holding a job at Chick-fil-A for three years, and serving as vice president of our Model United Nations club—all activities specifically involving leadership and public speaking—I demonstrate that people with hearing loss can have clear, articulate speech and succeed in their goals. Even by doing simple things like hanging out with friends at football games and restaurants, I show many that we are typical, fun people who have a place in the world. As a result of my 2018 Oticon Focus on People Award (third place in the student category), highlighting achievements by those with hearing loss, I was contacted by organizations such as Georgia Hands and Voices. There I led a discussion panel to inspire and answer questions from parents of children with hearing loss. My message to them and to any parent grappling with a new diagnosis of hearing loss for their child is to believe in their family and know that we can succeed, make an impact, and change the world.
Share your story: Tell us your hearing loss journey at editor@hhf.org.
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Nothing More Than Routine
family voices
By Riley Hernandez
When my brother James and I were diagnosed, shortly after birth, with moderate hearing loss in both ears, my mom did not know what to expect. I’m sure a fair amount of time and stress was spent wrestling with uncertainties and trying to set expectations for what my abilities would be—because it’s true, I am disabled. However, my hearing loss is just that: the inability to hear as well as others without assistance. Nowhere within the definition of my disability can I find any limitations for anything other than hearing ability. I wear hearing aids every day to nearly all my activities, and they give me the ability to hear just as well as anyone else. I have attended mainstream schools all of my life, and I have been able to succeed in my classes. While our mom did have us do auditory verbal therapy when we were young children, nothing about my educational career sticks out as unusual in any negative way. In school, I developed strategies such as making sure to choose a seat toward the front or without distractions in order to focus more fully on the teacher. Another strategy I use is asking questions to clarify the information. I learned early on that asking questions and getting answers will help you succeed. Instead of asking teachers to just repeat the information, I say, “Just to clarify, the three parts of an atom are the proton, neutron, and what else?” Asking a question in such a way accomplishes a few things: It lets the teacher know I was paying attention and retained some information, it allows me to review the information I do know by repeating it, and it still accomplishes the main goal
I learned early on that asking questions and getting answers will help you succeed. Instead of asking teachers to just repeat the information, I say, “Just to clarify, the three parts of an atom are the proton, neutron, and what else?” Asking a question in such a way accomplishes a few things: It lets the teacher know I was paying attention and retained some information, it allows me to review the information I do know by repeating it, and it still accomplishes the main goal of getting the missing information. of getting the missing information. Then, when it comes to my homework, I am very thorough and will not move on from a problem until I have completed it fully and feel like I understand it. I strongly believe these approaches help in school—with or without hearing loss. When I walk into my room I see lots of trophies and medals from sports ranging from football to gymnastics. I may not be the best at sports (and some of these trophies may only be for participation), but I think the wide range of sports represented by these awards shows that playing sports is completely possible with hearing loss. Our family has discovered various products that help keep hearing aids dry during sports. And I found that when it comes to swimming, I can participate without needing my hearing aids. To answer the question is my life different? I mean, when I wake up in the morning I don’t feel different.
I don’t open my eyes and think to myself, “Wow, I can’t hear.” Not at all. To be honest, I hardly think about my disability now, and things like changing the batteries to my hearing aids have become nothing more than routine. This disability has been a part of my life forever. To me, it feels normal, not different. That being said, I am not saying that having a hearing loss is a walk in the park all the time. There are definitely instances when it can be tough not being able to hear as well as others. If there is one thing I want to emphasize, it’s that my hearing loss is a valid disability that I live with every day and should be recognized, but it is not something that I will ever let hold me back from any activity that brings me joy or success.
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living with hearing loss
hearing health foundati o n
How to Parent When You Have a Hearing Loss “Remember to face me when you talk to me.” “Can you speak a little bit slower?” “Please move your hands away from your mouth.” “Come here if you need to talk to me; I can’t hear you in another room.” “If I can’t see you, I can’t hear you.” I sound like a broken record, even to myself. But what is my alternative? I need to teach my children how to speak to me so I can hear them. It’s not an easy task. This is not a new battle—my children are teenagers—but it is an ongoing one. They will remember some days, and forget other times. They are clear communicators while speaking for a minute, but turn away for the next. It can cause sadness and frustration on both sides. I wonder why they can’t consistently speak so I can understand them, and they get annoyed that their nagging mom cannot hear them. It is a struggle, especially when they wave their hands at me in frustration and say, “Never mind.” That really gets my goat. Maybe my expectations are too high. It is difficult for most adults to alter their speech patterns on a regular basis, so why should I expect this from children? But on the other hand, childhood is the time when learning is easiest, and new habits are being formed daily. Children learn how to hold a fork, dress and bathe on their own, and many other things. Why shouldn’t they be able to learn to speak in a loud, clear voice so I can hear them? A decade and a half into parenthood, here are my tips for trying to remain a patient, loving parent, while coping with the added frustration of hearing loss.
Shari Eberts with her teenage kids.
By Shari Eberts
Take care of yourself. As the safety message warns before every flight, “Put your own mask on before assisting others.” I practice yoga and meditate regularly to keep my body and mind as strong as possible. This helps me tackle the hard work of hearing and allows me to better manage my frustration. Be persistent. Parenting is all about repetition, so this is not any different. I remind the kids how best to make sure I am hearing them, and when they forget I remind them again. Keeping your voice neutral and calm during the reminders is critical, but not always easy. Offer encouragement. I notice when they do something to help me hear and I compliment them for it. Positive reinforcement can go a long way. Forgive them when they fail. We all fail from time to time. Remaining angry is useless. I work on this one every day.
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living with hearing loss
My children and I play speechreading games every so often. Not only does it perfectly illustrate my “I can’t hear you if I can’t see you” mantra, it is also fun. It can be as simple as having the kids speak without making any sounds, and seeing if I can understand what they are saying. Half the time they burst out laughing, as do I, which makes it fun! It’s also great practice. Pick your battles. You can’t expect perfection so use your reminders wisely. This will cut down on message fatigue, where they just tune you out. Schedule important conversations. If there is something particularly important to discuss that isn’t timely, don’t take it on when you are exhausted at the end of the day. Wait for a time when you have better stamina. Set boundaries. When your children are angry or upset, ask them to calm themselves first and then speak. Not only is this an important life skill, but it will also immeasurably aid communication. Practice speechreading. My children and I play speechreading games every so often. Not only does it perfectly illustrate my “I can’t hear you if I can’t see you” mantra, it is also fun. It can be as simple as having the kids speak without making any sounds, and seeing if I can understand what they are saying. Half the time they burst out laughing, as do I, which makes it fun! It’s also great practice. Don’t forget to laugh. Related to the tip above, we know that hearing something wrong can often be funny, provided you’re in the right mindset. A joke can definitely lighten a tough situation and set the stage to try again.
Keep your eye on the prize. Better communication with your children is the primary goal, not that they follow some specific formula for talking to you. Stay flexible and ask them what they think might work. The good news is that children are very accepting. One day I asked my children if it bothered them to have a mom with hearing loss. They looked at me like they didn’t understand the question. It is all they have ever known.
Shari Eberts serves on the Board of Trustees of the Hearing Loss Association of America and is a past chair of HHF’s Board of Directors. This originally appeared on her blog, livingwithhearingloss.com.
Share your story: Are you a parent with a hearing loss? Tell us at editor@hhf.org.
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Repeat what you did hear. This lets the speaker know which part of what they said was unclear, so they can rephrase just what you missed, not everything. a publication of hearing health foundation
spring 2020
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h e aring health foundation
The Children Who Inspired Books
The Silent Mockingbird Our toddler’s hearing was fine. She just couldn’t speak. Then we learned about auditory processing disorder. By Monica Chiarappi
Monica Chiarappi with her husband Bryan and their son Micah and daughter Savannah.
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When we noticed our daughter Savannah wasn’t talking like other toddlers, even simple words like mama and dada, my husband Bryan and I brought her to every sort of doctor. We saw not one but two pediatricians, we met with early intervention specialists four times, and repeatedly visited our local medical center for hearing checks. But no one could tell us what was wrong. Her hearing was fine. She just couldn’t speak. After months of research, I finally came across information about auditory processing disorder (APD). I had never heard of it, but APD seemed to fit Savannah’s symptoms. I spoke about APD to our doctors, describing how hearing test results can show nothing outwardly wrong, but that oral communication challenges point to something amiss with hearing. Only then did Savannah get diagnosed correctly with APD, setting us off on a long road toward discovering what it means. In its most simple definition, APD (also known as central auditory processing disorder) is an umbrella term for a variety of disorders that affect how the brain processes sound information. What makes APD a challenge to diagnose is that the parts of the ear (outer, middle, inner) usually do not betray anything awry in terms of structure or function—the results of pure-tone audiograms do not reveal a hearing loss—but the brain is unable to fully process the auditory information it receives. Simply put, the ears and brain are not fully coordinating with each other. Something interferes with the way the brain interprets sounds, especially speech in the presence of background noise. We learned that APD affects roughly 5 percent of school-aged children, affecting speech and language development, in part because young children are still learning the rules of speech and language. They lack the language base that adults can use to help interpret oral communication from teachers or classmates in difficult listening situations, such as at a distance or in noisy classrooms, cafeterias, or gyms. There is no definitive cause of APD. Research shows an association with frequent ear infections, lead poisoning, or head trauma. For us, Savannah had constant ear infections as an infant. I also had an emergency C-section when she got stuck during delivery, and they had a hard time getting her breathing after she was delivered. Our doctors couldn’t officially say all of this is what caused the APD, but I personally think these factors contributed.
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What makes APD a challenge to diagnose is that the parts of the ear (outer, middle, inner) usually do not betray anything awry in terms of structure or function—the results of pure-tone audiograms do not reveal a hearing loss—but the brain is unable to fully process the auditory information it receives. Simply put, the ears and brain are not fully coordinating with each other. Something interferes with the way the brain interprets sounds, especially speech in the presence of background noise.
Does Your Child Have APD? The Kids Health website (kidshealth.org) lists signs and symptoms of APD. For our daughter Savannah, we answered an emphatic yes to all of them. Is my child easily distracted or unusually bothered by loud or sudden noises? Yes. Savannah gets distracted extremely easily—by anything. And children with APD have a touch fascination so she has to touch everything, which is also distracting. Are noisy environments upsetting to my child? Does my child’s behavior and performance improve in quieter settings? Yes and yes. Kids with APD have very sensitive hearing. The more sound and noise, the harder it is. This was a tough one for us to figure out. We found that simple places like the grocery store, mall, or indoor playground would be too much for Savannah—even the car wash, which for most kids is fun. In public toilets I would have to cover her ears while she went potty so she wouldn’t panic from the sudden loud sounds of the toilet or hand dryer. Eventually we got her a pair of noise-canceling headphones, and it’s amazing how well they are helping her! Does my child have trouble following directions, whether simple or complicated? Yes. One single direction was always easier for her to understand, but when I gave her multiple directions, she didn’t understand. Example: “Can you get your cup and bring it to the kitchen?” She
would not understand because it is two steps. To help, I would say, “Can you get your cup,” and wait for Savannah to do that first. Then I’d praise her for understanding, and follow up with “can you bring it in the kitchen” and point to the kitchen. I need to break down sentences into shorter components for her to comprehend. Does my child have reading, spelling, writing, or other speech-language difficulties? Yes. Her writing and drawing have always been exceptional. However, her reading and speech are behind. Every year, it is always like she is a year behind in comprehension and speech, and in addition to the speech-language appointments we get extra help with these subjects when we need them. Are verbal (word) math problems hard for my child? Yes. Numbers are easy, and in fact she is above average in math skills, but when she has to understand words to solve a word problem, or any verbal questions are given, she can’t follow the oral commands. Written math is easier. Is my child disorganized and forgetful? Yes. She doesn’t mean to be and gets distraught when she realizes it. Savannah misplaces toys and cries so hard and apologizes that she lost something. She just doesn’t remember where she puts things down. Are conversations hard for my child to follow? Yes! Especially if there is more than one person talking or it’s noisy. —M.C. a publication of hearing health foundation
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The Children Who Inspired Books
h e aring health foundation
Coping Strategies That Work for Us
Reduce background noise whenever possible. We always mute or pause any movie or music playing if we have to say something to Savannah. Have your child look at you when you’re speaking. This is important. I always tell Savannah to look at my eyes, and I repeat myself slowly and calmly a few times. Use simple, expressive sentences. Too many words or too many commands cause confusion. I can tell by her expression the minute she doesn’t understand. Speak at a slightly slower rate and at a mildly increased volume. I slowly explain, using simple words. And actually because of Savannah’s sensitivity to noise I have to be careful not to raise my voice. Maintaining a household routine with organization and scheduling can help. I can’t stress enough the importance of routines. Any deviation from our daily schedule would cause so many issues, and it’d take days to get her back on track. It came down to the simplest detail of always brushing our teeth before changing into jammies. If we did it the other way, she would cry. We know that life can’t always be peaceful and organized (we had a second child, moved, had health issues—it’s life!), but keeping to a routine and being calm is always helpful for kids with APD. Work with the school. Kids with APD are usually mainstreamed. Savannah is now in first grade at our local school. Starting in kindergarten, we have been careful to make sure the teachers are aware of her specific needs and disability. The more they know, the better they can help. We filled out tons of paperwork, and have had numerous tests done at school. We meet several times a year in addition to the usual parent/teacher conferences. These help us keep up to date, and we can bring up our concerns. Savannah also receives additional support for
Kids with APD have very sensitive hearing. The more sound and noise, the harder it is. This was a tough one for us to figure out. We found that simple places like the grocery store, mall, or indoor playground would be too much for her— even the car wash, which for most kids is fun. Eventually we got her a pair of noise-canceling headphones, and it’s amazing how well they are helping her! math, speech, and reading, and even talks to a therapist in general. She is a very emotional child, which is also part of APD. She has a lot of anxiety, and it’s important that she feels she can talk to her teachers at school. Build your child’s self-esteem. We’ve always praised Savannah when she does well, and say “good try” when she fails. By the time she was 3, we could tell she was already having self-esteem issues. When she could talk, she would say things like “I’m not as good as. . . .” Her younger brother Micah is very verbal and she picked up on that quickly, comparing herself to him. We stress daily that you can’t compare yourself to anyone, and that she is amazing just as she is. —M.C.
Monica Chiarappi is the author and illustrator of “The Silent Mockingbird,” inspired by her daughter’s struggle with auditory processing disorder. She lives with her family in Harwinton, Connecticut. For more, see thesilentmockingbird. com. For references, see hhf.org/spring2020-references. 20
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family voices
My sincerest hope is this book brings more awareness, as well as encouragement, to kids with speech delays, no matter the cause. Ideally “The Silent Mockingbird” will allow other families coping with APD to understand more about the experience of the condition as well as to know they are not alone in facing it. The more we learned about APD the more I thought we could share the information that we learned, and make it accessible to children. I hold degrees in graphic design and digital media and decided to put them to use writing and illustrating a children’s book about APD. In “The Silent Mockingbird” we meet Maggie the mockingbird, who is born unable to sing. She watches her brother and sisters learn to sing, and wants more than anything to sing her song. Even though Maggie feels sad, she never gives up. Maggie learns the importance of listening and determination, and even meets an encouraging friend along her journey. It is a tale of gentle inspiration for every child with dreams of finding their voice. When our daughter was very young, she would jabber whole sentences without a single intelligible word. Savannah had so much to say, and it broke my heart we couldn’t understand any of it. It wasn’t until age 3 that she spoke words we as her family could interpret. She is now 6 years old but remains very behind with her speech and is still hard to understand, especially to those who don’t know her. Savannah meets with a speech-language pathologist four times a week and gets extra help with math, since even in first grade the exercises are oral word problems. My sincerest hope is this book brings more awareness, as well as encouragement, to kids with speech delays, no matter the cause. Ideally “The Silent Mockingbird” will allow other families coping with APD to understand more about the experience of the condition as well as to know they are not alone in facing it.
A Commitment to Funding Research Hearing Health Foundation is grateful to the General Grand Chapter Royal Arch Masons International and the trustees of their foundation, the Royal Arch Research Assistance (RARA), for their incredibly generous support of research on central auditory processing disorder (CAPD, also known as auditory processing disorder). Since 2011, RARA has funded CAPD investigators as part of our Emerging Research Grants (ERG) program. The 34 ERG researchers RARA has funded so far, listed at hhf.org/rara, have made tremendous strides toward a better understanding of CAPD as well as developing treatments and therapies that can benefit anyone affected by the disorder, from children to seniors. To date, about a third of these scientists have furthered their studies by receiving federal grants totaling nearly $12 million. This additional funding to study CAPD and hearing loss is possible because RARA made an initial investment in these investigators’ work. HHF appreciates RARA’s commitment to CAPD research and its trust in our rigorous grant review process. We look forward to achieving meaningful outcomes together. —Gina Russo
Share your story: Do you or a family member have APD? Tell us at editor@hhf.org.
Support our research: hhf.org/donate
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h e aring health foundation
The Children Who Inspired Books
Super Kena
Top and above: Kena received her first hearing aid at age 3 1/2 months; and with her family today. Opposite: Kena with Becky Cymbaluk, her grandmother.
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A few days after my first grandchild was born in 2016, her mother— my daughter Krystyna—told me that sweet baby Kena didn’t pass her hospital hearing tests. A week or so later, I accompanied Kena (pronounced “Kenna”) and Krystyna to the doctor for auditory brainstem response testing. We were told that Kena wasn’t hearing some sounds and would need a hearing aid. After additional tests, Kena was diagnosed with having Mondini dysplasia, a result of a developmental disruption during the seventh week of gestation. With this condition, the cochlea is not fully developed, and in Kena’s case it caused bilateral, mild to moderate sensorineural hearing loss. At age 3 1/2 months Kena received her first hearing aid in her left ear and, surprisingly to us adults, she took to it pretty easily. By the time she was 18 months old she received another hearing aid for the other ear. She kept them in quite well, except when she was tired, and then she’d pull them out herself, a sign she needed to unplug from all the noises. Shortly after Kena turned 2, Krystyna took her to their local library for story time. As they were leaving, she noticed two children talking about Kena’s hearing aids. They weren’t being mean, they were just curious and most likely wondering why her ears were blinking. Although Kena hadn’t noticed anything, Krystyna was upset. She told me, “I can’t let other kids define who Kena is. She needs to be fierce no matter what she has to deal with!” I had previously been looking online for children’s books featuring kids who wear hearing aids so Kena could relate to them, and was disappointed with what I had found. Oddly, few books featured children with hearing aids, but there were many with animals and hearing aids. I wanted Kena to see herself in a book, not a make-believe story of a bunny wearing devices. That’s why I was inspired to write “Super Kena.” When I showed Kena the book cover she pointed to her hearing aids and said, “Just like me!” Getting the book written and published has been an enlightening journey, with many challenges and a big learning curve, but I am passionate about advocating for Kena and other children who have obstacles to face daily. For me, this has been a true labor of love. At age 3, Kena is doing great, very feisty and yet sensitive to others. She’s a very visual learner and doesn’t forget the things she sees or where she sees them. She uses about 30 words in sign language and talks a lot. Her speech development is coming more
photo credits: krystal marie photography (bottom left); marilee hanson (right)
A grandmother pens a children’s book to empower her family. By Becky Cymbaluk
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slowly because we aren’t sure what sounds she can clearly hear. Kena receives speech therapy weekly, and we, her family, will continue to empower her to be the “fierce girl” she is determined to be! “Super Kena” is a hardcover book for children ages 4 to 8. In the book, although Kena and her friends get teased at school for being different, a conversation with her mother sparks an idea about how she can help the rest of her class understand them better. It empowers this little girl to realize she’s a superhero by wearing hearing aids and helping other children find their own superpowers to meet their own challenges, whether it’s diabetes, a food allergy, asthma, or a stutter. Together Kena and her superhero team make the world a better place as everyone realizes they are all more alike than different.
Shortly after Kena turned 2, Krystyna took her to their local library for story time. As they were leaving, she noticed two children talking about Kena’s hearing aids. They weren’t being mean, they were just curious and most likely wondering why her ears were blinking. Although Kena hadn’t noticed anything, Krystyna was upset. She told me, “I can’t let other kids define who Kena is. She needs to be fierce no matter what she has to deal with!”
Becky Cymbaluk and her husband Dan live in northern Minnesota, where they farm small grains and sugar beets. Their adult children are Krystyna, a teacher; Anna, a pediatric endocrinologist; and Zach, who farms with them. For more, see superkena.com.
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A group of middle school students finds inspiration in nature for a versatile, sound-absorbing fabric. By Ananya Atri, Lara Rodriguez, Medha Sri, Hamsika Vedavinayagam, and Amita Vellal
Above: The male small emperor moth (saturnia pavonia). Opposite, top: The Pajama Llamas are a First LEGO League robotics team in Massachusetts tackling the issue of noise pollution. Opposite, bottom: This image from a study the team used as a reference shows the moth wing scales and the ridges and cross-ribs that absorb ultrasound emitted by bats in search of food.
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graphic courtesy of zhiyuan shen, proceedings of the national academy of sciences
Moth Mimicry
We are the Pajama Llamas, a First LEGO League (FLL) robotics team in Massachusetts. We are a team of five girls ranging from 12 to 14 years old. In FLL, teams research a real-world problem such as food safety, recycling, energy, or water conservation and are challenged to develop a solution. We also design, build, and program a robot using LEGO Mindstorms technology and then compete with our robot on a table-top playing field. We learn to apply concepts in STEM (science, technology, engineering, and math) to solve a problem. We also develop critical thinking and team-building skills, basic STEM applications, and even learn to present, as we must showcase our solutions with creativity to judges. Our challenge this year is called “City Shaper.” For our theme we are focusing on the aspects of noise pollution. We investigated how noise affects day-to-day life, the long-term consequences noise has on people, what individuals can do to lower the noise level, and how we can prevent noise pollution. We conducted research on the effects of noise pollution that led us to the work of several scientists and Hearing Health Foundation’s decibel chart. Noise pollution is defined as an excessive amount of noise or an unpleasant sound that can harm human or animal life. This definition is usually applicable to sounds or noises that are unnatural in either their volume or their production. We can see that scientists list many negative health risks from noise pollution, not only the permanent loss of hearing but also headaches, sleep disruption, anxiety, heart disease, and high blood pressure. The hearing of pets and wildlife can also be affected by noise, potentially disrupting hunting and mating and causing aggression and disorientation.
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We set out to devise a way to absorb noise. Our solution is to turn to biomimicry, inspiration from nature, to create a fabric that we are calling Sorbere (Latin for “absorb”). The fabric is based on the structure of nanostructured scales on emperor moth wings, which absorb the ultrasound used by their predators— bats—to locate the moths. The structure, shape, and arrangement of the moth wing scales all work together to absorb the ultrasound from bats so that the moth cannot be detected as food. We set out to devise a way to absorb noise. Our solution is to turn to biomimicry, inspiration from nature, to create a fabric that we are calling Sorbere (Latin for “absorb”). The fabric is based on the structure of nanostructured scales on emperor moth wings, which absorb the ultrasound used by their predators—bats—to locate the moths. The structure, shape, and arrangement of the moth wing scales all work together to absorb the ultrasound from bats so that the moth cannot be detected as food. Our sound-absorbing fabric replicates the ridge and cross-rib design of the moth scale. Because the scales on the moth wings only absorb ultrasound frequencies—above 20 kilohertz (kHz)—we have enlarged the size of the pattern so Sorbere can absorb sound that is audible to humans, which ranges from 0.02 kHZ to 20 kHz. The moth wing scale is 3.5 micrometers thick. Our Sorbere fabric is 3.5 millimeters thick. We believe the applications for Sorbere are wide reaching. The fabric can be used for almost anything, such as hats, hoodies, earmuffs, drapes, and covers for machines, such as lawnmowers. There are also industrial applications like curtains in workshops, warehouses, and workplaces. We are hoping this fabric can be produced in any fabric factory that can adapt to a specific threading pattern. Our plan is to use a naturally sound-absorbing material such as cotton to boost the sound absorption even more. We also estimate that Sorbere will be less expensive than other soundproofing material, while being thinner as well, which makes it more lightweight, wearable, flexible, and comfortable. We are excited for the next phase of this project!
To learn more, see firstlegoleague.org. For references, see hhf.org/spring2020-references.
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meet the fundraiser
hearing health foundation
Listening to the Story By Joe Mussomeli
Avid reader Alex Mussomeli, shown at age 9 in 2014, with his favorite books.
I found our copy of “Fudge-a-Mania” and, mimicking my mom, read out sections to Alex and asked him to repeat certain sentences. I could tell he liked how Fudge pulled pranks on his brother, laughing whenever Fudge succeeded.
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Like most people, I have memories from childhood that have remained with me and influenced who I am today. One of my most special memories is practicing speech and auditory therapy with my younger brother Alex. Alex was born with a hearing loss, so my mom and dad intervened early to ensure his future success with not only hearing, but also speech. The first step my parents took was to get Alex hearing aids when he was a baby. Later, at age 3, he underwent an operation to receive a cochlear implant in his right ear. After Alex received his implant, my mom began practicing speech and auditory therapy with him. Every day after school, while other parents took their children to soccer practice or helped them with their homework, my mom worked carefully with Alex to improve his speech and hearing. She made up sentences for Alex to repeat, and then corrected him if he misheard or mispronounced a word. Speech and auditory therapy requires a lot of effort. Since my mom put so much time into it, she wanted me to be involved. Sometimes she instructed me to create phrases for Alex to repeat back to me. I knew he found this tedious. Still a little kid myself, just two years older, I wasn’t exactly thrilled either but wanted to help my brother. Alex constantly felt like he was missing out on activities that his friends were able to enjoy. He often wanted to go outside and play rather than work with my mom, but couldn’t. One day when he was about 6, Alex decided he was fed up with practicing and ran upstairs. I was already in our bedroom and asked what was wrong. He said he found speech and auditory therapy boring. I asked him what he thought was fun, and he said he loved reading about Fudge (in the book series by Judy Blume). I found our copy of “Fudge-a-Mania” and, mimicking my mom, read out sections to him and asked him to repeat certain sentences. I could tell he liked how Fudge pulled pranks on his brother, laughing whenever Fudge succeeded. Alex didn’t mind repeating sentences; in fact, he said that it allowed him to fully absorb everything from the story. Afterward, Alex was all smiles and even asked me if we could do it again. We’ve been reading together ever since, into our teens, for the past nine years. Alex continued speech and auditory therapy, and his language development benefited significantly. A big fan of fantasy and fiction, Alex and his love for reading inspires our entire family.
Joe Mussomeli is a high school junior in Connecticut. His brother Alex Mussomeli has donated sales of his paintings in support of Hearing Health Foundation and was featured in the Summer 2016 issue, at hhf.org/magazine. We sincerely thank the Mussomelis for their ongoing support.
meet the fundraiser
A Family Gives Back By Lauren McGrath
Sisters Katelyn, 12, and Solenne, 11, were born with severe to profound hearing loss and received cochlear implants. Their parents, Genevieve and Brian Bouchard, are grateful for the research and technology that allow their children to hear, so the family decided to give back through a fundraiser, “Cheer for Hearing.” The event was held at Scout and Molly’s, the boutique the Bouchards own in Westport, Connecticut, to help benefit Hearing Health Foundation (HHF) in support of life-changing hearing loss research and awareness. The shop was open to the public during the day with 10 percent of sales supporting HHF and another 10 percent going to the Staples High School cheerleading team in Westport. In the evening, Genevieve Bouchard and the team mingled with a private group of attendees with food and beverages, raffle prizes, and a silent auction. Each year the cheerleaders organize a fundraiser at Scout and Molly’s in conjunction with one nonprofit organization. Genevieve says she chose HHF because her daughters, who attend a mainstream
Before an audience of mostly school-age children and their parents, the event highlighted HHF’s research plus the importance of hearing loss prevention and overcoming stigma. school, benefit from cochlear implant technology, which HHF-funded research in the 1970s helped bring to fruition. Using a local CART (communication access realtime translation) provider, HHF staff gave an overview of our research. We also highlighted the importance of hearing loss prevention and overcoming hearing loss stigma to the audience of mostly school-age children and their parents. HHF is sincerely grateful to the organizers for the opportunity to share our mission, and thank the event guests for their interest in our work.
Lauren McGrath is HHF’s director of marketing and communications. Help HHF find better treatments for hearing conditions by hosting a fundraiser. Events can range from golf outings and bake sales, to birthdays and weddings, to marathons and triathlons, in person or online. For more, see hhf.org/how-to-help.
The Bouchard family hosted a fundraiser for HHF at their Connecticut boutique.
Share your story: Tell us your hearing loss journey at editor@hhf.org.
Support our research: hhf.org/donate
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advocacy
h ear i n g health foundation
This 10-Year-Old Inspired Hearing Aid Legislation Ally Tumblin, a 10-year-old Colorado girl who was born without her right ear canal, loves listening to music. She wears a bone-conduction hearing aid
Shown with her cat Chai, Ally Tumblin asked her U.S. Representative to help all children gain access to hearing.
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that allows her to hear in class at her elementary school, play video games, skateboard safely because she can hear traffic, hear her cats purr, and even sing in her school choir. “Adults and children like me need hearing aids to hear better,” Ally says. In 2019, Ally’s mother Melissa Tumblin visited Washington, D.C., on Advocacy Day, a chance for thousands of people to meet with members of Congress about their missions. She spoke with three U.S. Representatives: Mike Thompson of California, David McKinley of West Virginia, and Joe Neguse, who represents her family’s town in Colorado’s 2nd Congressional District. In addition, as part of a homework assignment about giving back to the community, Ally wrote a letter
to Neguse introducing herself and asking him to help individuals with hearing impairments. He listened. Neguse, the vice chair of the Medicare for All Caucus, introduced legislation in December 2019 that would ensure private insurance companies provide coverage for osseointegrated hearing devices, or OIDs, including bone-anchored hearing aids (BAHAs) and cochlear implants. OIDs are designed to transfer sounds through bone conduction to the inner ear. Each device costs between $5,000 and $8,000, says Tumblin, and they have to be replaced every five years. When her insurance company denied coverage of her daughter’s hearing device, Tumblin formed Ear Community to help advocate for coverage of these devices to make sure no one is left unable to hear because of private insurance companies’ refusal to grant coverage. The group is a supportive community for individuals who were born with microtia, when the external ear is underdeveloped, and atresia, which is an absent or underdeveloped ear canal, resulting in hearing loss. It also offers information about educational opportunities, a forum for discussion, and photos that illustrate various surgeries. OIDs help different forms of hearing loss more effectively than traditional hearing aids, and often are the only hearing devices that can restore hearing. “For Ally and others with varying modes of hearing loss, OIDs are miraculous devices that create opportunities for them to
photo credit: jennifer rios, broomfield enterprise
By Jennifer Rios
advocacy
Hearing Aid Acts to Follow Ally’s Act is a federal-level effort to help cover the cost of hearing instruments for children. There has been other legislation in support of pediatric coverage, both at the national and state level. The Hearing Loss Association of America (hearingloss.org) and the American Speech-Language-Hearing Association (asha.org) each keep track of state-by-state information, as does the National Center for Hearing Assessment and Management (infanthearing.org). A year ago last April, Elizabeth “Betsy” Keithley, Ph.D., the chair emerita of HHF’s Board of Directors, voiced her support for a California bill (AB-598) to cover the cost of pediatric hearing aids. Her letter read in part: “The majority of individuals with sensorineural (permanent) hearing loss, including children, can benefit from hearing aids as treatment to communicate, learn, and develop healthily. A pair of pediatric hearing aids can burden a family by as much as $6,000 per pair, which generally must be replaced every three to five years. This is an out-of-pocket expense of over $40,000 before a child reaches age 21. “This immense financial barrier to treatment results in absence of treatment that then inhibits children’s social, speech, and language development, and academic performance. For an individual child who does not receive intervention, the estimated cost of special education and loss of productivity is $1 million.” Known as the Let California Kids Hear Act, the bill unanimously passed in September 2019, but a month later was withdrawn by legislators, according to a PoliticoPro story. The governor and his administration are currently trying to fit the expected cost into the state’s budget. The bill has some celebrity heft behind it. The Caruso family—father Rick, a multibillionaire L.A. real estate mogul; mother Tina, a former swimsuit model and fashion designer; and daughter Gigi, a college sophomore and swimsuit designer who was diagnosed with a hearing loss at age 3 months—have spoken out about the value of AB-598. “I want to be an advocate for kids with hearing loss,” Gigi tells the Los Angeles Times. “I want them all to have the opportunities that I’ve had.” Once the budget process concludes, the hope is that the bill takes effect in July 2021. Another recent state bill that passed in 2019 was in Nebraska. Effective in January 2020, the Adopt the Children of Nebraska Hearing Aid Act (LB15) made Nebraska the 23rd state in the nation to pass such a bill, according to the Grand Island Independent. —Yishane Lee
< $6,000 Cost for a pair of pediatric hearing aids.
3 to 5 years
How often pediatric hearing aids are generally replaced.
> $40,000 Out-of-pocket cost for hearing aids before a child reaches age 21.
$1
million
Estimated cost of special education and loss of productivity for an individual child who does not receive intervention.
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Tumblin believes hearing device insurance coverage needs to be consistent. Many families she speaks with say their insurance companies offer a variety of reasons to deny coverage, such as calling the devices cosmetic or saying it is experimental technology.
actively participate in our communities,” Neguse says. “I am honored to have the opportunity to work alongside Melissa and Ally to create better access to these devices for individuals throughout our nation. We must ensure that insurance coverage for hearing devices is consistent and fair, to ensure every child can thrive and obtain the healthcare they deserve.” Tumblin believes hearing device insurance coverage needs to be consistent. Many families she speaks with say their insurance companies offer a variety of reasons to deny coverage, such as calling the devices cosmetic or saying it is experimental technology. With a bill in place, Tumblin says families in Colorado are one step closer to achieving improved, equitable hearing healthcare. “Hearing is fundamental to early education and speech development and needs to be provided for all those needing hearing assistance,” she says. Tumblin and Rachel Songy, a member of Ear Community’s board of directors, worked on the bill, called Ally’s Act, providing documentation and proof of hearing device denials and information about the hearing devices to members of Congress and their staff. “As someone who was born with severe conductive hearing loss, I know the passage of this bill will improve the quality of life in immeasurable ways for children and adults by creating affordable solutions that have not been available in the past,” Songy says. “This bill will be a huge step in helping more people to hear, especially those who have not had that chance before.” Donna L. Sorkin, the executive director of the American Cochlear Implant Alliance, an industry group, praised the legislation for improving access to hearing technology. “Access to hearing implants that can help adults stay healthy, connected, and employed, and for children to have maximum access to language and learning, is sometimes 30
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impeded by a lack of insurance coverage,” Sorkin says. “This bill will help open up important access to hearing health technology and related services—interventions that are cost effective and provide extraordinary quality-of-life benefits.” Tumblin also works for the Vanderbilt University Medical Center and helped launch its microtia and atresia clinic. Her supervisors include Roland Eavey, M.D. (a 1987–88 Emerging Research Grants scientist), who teamed up with Tumblin to conduct genetic research on the two conditions. “There’s so many of us who want to know, why did this happen?” Tumblin says. While they wait for answers, the legislation that Ally helped inspire will continue to help children who can benefit from hearing technology.
A version of this story originally appeared on the Colorado website Daily Camera, at dailycamera.com. U.S. Representative Joe Neguse (D-CO) introduced H.R. 5485, known as Ally’s Act, into Congress in December 2019. It is cosponsored by Representatives David McKinley (R-WV) and Mike Thompson (D-CA). For references, see hhf.org/spring2020-references.
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Braden Baker raised over $130,000 to help people who need hearing aids receive them.
How One Kid Raised Thousands for People in Need of Hearing Aids
By Katie Marler
When Braden Baker’s dog, aptly named Chewy, chewed up the then-10-year-old’s hearing aid— for the second time—his mom, Ashley Baker, talked with him about how expensive hearing aids are and how to take care of them. She mentioned that not everyone has the means to replace them when accidents happen. Often, as in Braden’s situation, insurance doesn’t cover the cost of replacement hearing aids. In fact, as of March 2019, only 23 states offer some kind of coverage for children who need hearing aids. This fact sparked something in Braden. “I was really sad that something like that could happen,” he says. Inspired to help people get hearing aids, Braden filmed a short video to share on his mom’s Facebook wall and created a GoFundMe account to raise money to help pay for hearing aids for others. Braden’s original goal was to raise $1,000, but he ended up raising over $130,000 dollars (and counting) for the Oticon Hearing Foundation through GoFundMe. As a result of his fundraising, Braden appeared in People magazine, on “The Ellen DeGeneres Show,” and on the podcast “True Stories of Good People” presented by GoFundMe. For his 11th birthday, Braden traveled to Guatemala to help distribute hearing aids to people who needed them, accompanying
Hearing the Call, a nonprofit run by the Indianabased Entheos Audiology Cooperative. The nonprofit goes on missions to the developing world to provide audiology services and treatments. When Braden appeared on her show, DeGeneres said, “That’s an amazing thing, that an 11-year-old, for their birthday, wants to go to Guatemala and hand out hearing aids to people who can’t afford them!” Braden, now 13, continues to make videos, speak at local TEDx Talks, and receive coverage from news outlets and magazines—all while in middle school. He also recently traveled to Zambia to help distribute hearing aids. So far more than 200 individuals have received hearing devices thanks to his efforts. To other kids wearing hearing aids because of a hearing loss, Braden would like to remind them: “Don’t ever let it stop you from doing something you want to do.”
Katie Marler is a marketing communications associate at Eosera, a biotechnology company that makes ear care products donated toward Braden’s cause. For more, see bradenbakerhears.com.
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Riding Strong Thanks to my parents, at age 10 I became an early cochlear implant recipient, leading me to advocate for the life-changing technology ever since. By Jacob Landis
In 2013, Jacob Landis cycled for six months across 10,500 miles to raise awareness about cochlear implants. Today he continues to raise funds to help families gain access to hearing.
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When I was 2 years old, I began to lose my hearing from an unknown cause. It began slowly, as I did not need my first pair of hearing aids until I was in kindergarten at age 4. I stayed in our local school, and as my hearing worsened I used a portable FM system, progressed from analog to digital hearing aids, sat near the front of the room, and had speech therapy on a weekly basis. My parents were strong advocates for my success, working with the school system for everything I needed. But my hearing fell off a cliff between ages 8 and 10, and even the strongest hearing aids could not help me achieve in the classroom. I was a good student but became increasingly frustrated, angry, and withdrawn. I quit playing team sports like baseball and soccer. I remember one evening I burst into tears when I saw my little
brother and sister run to answer the telephone and realized that I could no longer hear it ring. I began dropping out socially, academically, and emotionally. At the time in the 1990s, the cochlear implant was almost unheard of. But because of my fatherâ&#x20AC;&#x2122;s tireless efforts to find the cause of my hearing loss and prevent additional hearing loss, he happened to notice a brochure for the cochlear implant during one of many appointments to specialist doctors. Intrigued, he began to investigate. Although initially discouraged by unaware professionals, he was persistent, and we began traveling to Johns Hopkins Universityâ&#x20AC;&#x2122;s Listening Center in Baltimore, Maryland, for candidacy screenings. In June 1999, at 10 years old, I was implanted at Johns Hopkins
family voices
Early Adopter By Randy Landis
At the time in the 1990s, the cochlear implant was almost unheard of. But because of my father’s tireless efforts to find the cause of my hearing loss and prevent additional hearing loss, he happened to notice a brochure for the cochlear implant during one of many appointments to specialist doctors. Intrigued, he began to investigate. by the late John Niparko, M.D. (As it happens he received Hearing Health Foundation’s Emerging Research Grants multiple years in the late 1980s and 1990s for his studies of the mammalian auditory nerve.) I responded very well and went to listening rehabilitation weekly for my first 18 months after implantation. In addition to training my brain to use the electronic information now being delivered, the rehabilitation at Hopkins also trained me to advocate for myself, something that I am still working on 20 years later. I did so well with my implant that for a few years, I met with many families and even spoke to engineering students at Johns Hopkins. Back then, there were just a few thousand implantations worldwide—today there are more than 300,000. We now know that my success is not surprising. I had a strong auditory memory from my time using hearing aids, and most of my hearing was intact during the crucial speech and language window between ages 2 to 4. Most of all, the biggest reason I succeeded with the cochlear implant is because my parents
Jacob was born in 1989, before universal newborn hearing screening. In late 1991 we became aware that he had some minor high-frequency hearing loss, but we were told not to worry since he was so young and everything else was great. Even so, we started a regular follow-up routine (every three months) and each hearing test indicated more slippage. By 1994 the audiology report showed that the hearing loss was well inside the “speech banana,” affecting his ability to fully comprehend speech. We immediately got him hearing aids. Jacob did well with them, becoming a smart, articulate student at our local elementary school. When his hearing continued to diminish, our research/medical exams dramatically increased as we hunted for the cause. First we saw the pediatrician, then all local ENTs, and then the University of Maryland, Georgetown University, George Washington University, and Children’s National Hospital, which were all near our home in Maryland. We did tests and X-rays, and results were sent around the country to the Mayo Clinic in Minnesota, the Cleveland Clinic in Ohio, and to experts in California and France. Our thinking was that if we could find the cause, then one of two things would happen: We would be able to stop the progression, or we would have to prepare our son for a life of silence. We didn’t know that more than 90 percent of children with hearing loss have typical hearing parents, and to pinpoint a cause or causes is challenging. During a visit to Children’s, I noticed a simple cochlear implant brochure in the waiting room. The graphic on the front was a person pulling a small cart carrying a computer. But when I asked the specialist about it, he brushed it off and said it was “a new gadget, okay for large environmental sounds, but never good enough for normal voice recognition.” He wasn’t able to offer another solution or an idea of the cause for Jacob’s hearing loss. Our search continued from 1994 through 1998. All in all Jacob underwent more than 600 tests across hundreds of appointments. Many of the doctors took blood samples to look for infections, diseases, etc. We ended up back in Baltimore at Johns Hopkins University, for one last experimental procedure. Tests had revealed Jacob is missing three proteins in his blood. For nine months we infused a special concoction
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Left: Randy Landis and Jacob, around age 2. Below: Jacob Landis and his cochlear implant surgeon, the late John Niparko, M.D., after cycling together in L.A. in 2013.
of the blood proteins (intravenous immunoglobulin) from the National Institutes of Health. It was traumatic for Jacob, and for us. And at the end of this experimental procedure, we were no closer to solving the hearing loss. The doctor said almost the exact thing that the doctor at Children’s said: “Mr. Landis, every leading hearing loss expert in the country has looked at your son, his tests, his records. We just have to conclude that it is some rare autoimmune disease with no etiology. Good luck.” Tearfully, I thanked him for his time and turned to go. He then yelled from his office, “Wait, Mr. Landis, have you been upstairs to this new clinic called the Listening Center?” I said no. He said, “There is a new doctor, John Niparko, working with a device called a cochlear implant. You might want to talk to him.” I did go upstairs, and after 27 tests to definitively determine he was a good candidate for the implant (it is a fraction of that now), seven months later Jacob, at age 10, received one in his right ear. We were told he was roughly patient 5,000 in the world for an implant. Given the success of the implant, Jacob, even at that young age, began speaking about this miracle technology to various groups. Over the next couple of years we met with dozens and dozens of families, usually at our home, who were considering implantation for their child. All wanted to meet Jacob and see (and hear) firsthand just how well this relatively new—especially for children—technology worked. Hopkins also sent progress reports to the House Clinic in L.A. as part of efforts to reassure potential patients there of the technology’s viability. Now cochlear implants are indicated for infants as young as 12 months to seniors in their 90s, and we could not be more thrilled that sharing information about them—and helping families whose insurance does not cover them pay for them—has become a life’s work for our family.
Randy Landis lives with his wife Lois in Annapolis, Maryland.
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Jacob Landis with his parents, Randy and Lois, on his wedding day in 2019.
advocated for me before I could advocate for myself, giving me access to services and resources so that I could do as well as possible at school. Early, unimpeded exposure to speech gave me a very high likelihood for success. But it was my parents and rehabilitation that ensured that I was able to achieve that success. My parents were scared. They were desperate and rightfully concerned about my emotional and mental health. They pursued every option and expert they learned about. The internet was not yet available so their research was painstakingly hard work. In 2013, at age 24, I wanted to give back. I have always been a huge baseball fan, with season tickets to the Baltimore Orioles, and I love cycling for the quiet environment and relaxation time, so I began my mission to help those with hearing loss by riding my bicycle to all 30 Major League Baseball ballparks. I founded Jacob’s Ride for Hearing and embarked on a six-month, 10,500-mile cycling trip. I met Dr. Niparko, who had moved to L.A., and we rode 38 miles together. I am proud to say our donors have provided enough financial support to give the gift of hearing to 17 individuals throughout the U.S. who received cochlear implants. I myself received a second cochlear implant in my right ear in February 2018. Even though that ear hadn’t processed sounds for two decades, there were enough connections between my ears and my brain from infancy to age 10 that the new implant almost immediately improved my ability to locate sounds. The technology continues to be a miracle for me. And while I haven’t done another trip as epic as that first one, to date I have ridden my bicycle over 15,000 miles, appeared at more than 220 events in 40 states, and met thousands of wonderful people while spreading awareness of success with cochlear implants.
Jacob Landis graduated magna cum laude from University of Maryland Global Campus in December 2016. Landis works at Whole Foods Market as a buyer and is a frequent speaker about cochlear implant technology. He lives in Annapolis, Maryland, with his wife Rebecca and their dog Libby. Landis’s cochlear implant surgeon, John Niparko, M.D., who passed away suddenly in 2016, was a 1988–89, 1995–96, and 1998 Emerging Research Grants recipient. For more, see jacobsride.org. For references, see hhf.org/spring2020-references.
Share your story: Tell us your cochlear implant journey at editor@hhf.org.
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Surf Therapy Makes Waves By Sean Swentek
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In parts of the U.K., doctors can now prescribe surfing for children who show poor mental health. Slowly, surf therapy is progressing into a well-documented form of intervention for mental and physical health challenges and disabilities. trained surfers before being presented with trophies at the end of the day in front of cheering fans. “Before Kayden’s day on the water, trying something new, and with someone other than us—his parents—or another adult in his tight circle of trust, was unheard of,” Gray says. “I simply could not visualize Kayden going willingly into the water with an instructor.” But with the patient help at Camp Pendleton in San Diego, Kayden didn’t just go into the water. “He learned how to catch a wave. And another. And another after that. We were amazed!” Gray says. Kayden developed a sense of trust with his instructors, a newfound confidence, and most of all, an exhilarating time riding the waves. “One day of surfing has become an obsession for Kayden,” Gray says. “And now, four years later, surfing and continuing with AWOW are mainstays in our lives.” With more data and greater awareness, the hope is that surf therapy can become an accessible and effective treatment for additional children and adults across the country.
Sean Swentek is the executive director for A Walk on Water. Since launching in 2012, the organization has provided surf therapy to over 2,500 children and adults with special needs or disabilities. For more, see awalkonwater.org. For references, see hhf.org/spring2020-references.
photo courtesy of natalie gray
The ocean has long been touted as a place for transformation. While for some it can be a spiritual or otherwise intangible experience, research has underscored the ocean’s positive effects on one’s physical, social, and emotional wellKayden has gained being. Not only is water a place for self-confidence and healing, but surfing has documented independence out benefits, particularly for children with on the water. special needs or disabilities. Specifically, surf therapy has proven to increase self-confidence and pride from successfully accomplishing a sometimes scary goal; lower stress as a result of exercise and time spent in an outdoor environment; improve mental health and social and emotional well-being; boost self-confidence as a result of being placed in a new environment and from building trust with instructors; and increase social skills including improving being assertive, responsible, and engaged. Currently in the U.S., surf therapy is viewed as “nontraditional”—it is not recognized as an intervention nor is it covered by health insurance. But that tide is turning. In parts of the U.K., doctors can now prescribe surfing for children who show poor mental health. Slowly, surf therapy is progressing into a well-documented form of intervention for mental and physical health challenges and disabilities. When Natalie Gray first learned of surf therapy provided by a California-based nonprofit organization called A Walk on Water (AWOW), she was skeptical that it would help her son Kayden, who has a hearing loss. While she has fought tirelessly to give Kayden a life of opportunities not shaped or defined by his hearing loss, the reality of life with Kayden, then age 10, included navigating experiences in which he simply could not participate because they felt unsafe or—whether to his parents or himself—impossible. During a session with AWOW, athletes paddle out and ride ocean waves on tandem boards with specially
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The Power of Parents’ Well-Being By Joanne Travers
My daughter was diagnosed with progressive, severe hearing loss in 1994. She was 1 year old. My son was diagnosed with moderate to severe hearing loss 11 months later, shortly after his birth. The vision my husband and I embraced for our children was an auditory verbal philosophy, mainstream inclusion, and a future full of education and employment opportunities. Learning to listen and speak would become the foundation for their success. As their parents, we advocated for their needs and prepared them for independent lives. Now ages 25 and 23, our children are fully auditory, independent, and social, living on their own in apartments and working. In the mid-1990s my world revolved around my children as I delved into a world of hearing assistive technologies and auditory verbal therapy. Most friendships I cultivated back then were with parents of children with hearing loss who sought mainstream school placement and an aural/oral education. Gathering a group of supportive families who coped with hearing loss and children’s mainstream education was a pillar of well-being that we leaned on for information, friendship, and our mental health. Every parent had a story to tell, and this fueled fresh perspective and inspirational solutions to the variety of challenges families faced. Narratives emerged as I worked through my own grief, worry, and fears, and this gave me deeper insight into the care I gave to both my children. The joy of helping other parents and my own children thrive led me to start a charitable organization in 2001 to support people in developing countries. I traveled with volunteers of my organization to India, Honduras, and the Dominican Republic, offering training and education to not only caregivers but also practitioners of hearing health and education. Our missions fueled more than a hundred projects over the years. We started a school and parent groups, constructed therapy rooms, trained teachers and clinicians, and donated hundreds of hearing devices. Throughout the world, practitioners are challenged to enable parents and families who face poverty, health concerns, limited access to education, depression, and isolation from their own families. In low-resource communities, there are few choices in education and technology. Stigma and shame are prevalent—which also exists in a resource-rich country such as the United States. Enabling caregivers and supporting their grief led me to become certified in positive psychology and shift our international programs to focus on supporting and enabling leadership, potentiality, and positive character traits in caregivers. Through my own experience and that of the many families I have encountered over the decades, I know that making caregiver well-being a priority is essential to providing parents the tools for their children’s learning and communication development, from infancy into adulthood, and regardless of the family’s socioeconomic and educational levels. As parents facing an often unexpected hearing loss diagnosis, we must realize that we each have innate strengths to help us meet challenges and succeed.
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Parent groups gave nonprofit leader Joanne Travers, shown with her family, a sense of community as well as purpose.
This is excerpted from “Coaching and Empowering Caregivers of Children With Hearing Loss,” by Joanne Travers. A former board member of the Alexander Graham Bell Association for the Deaf and Hard of Hearing, Travers founded Partners for A Greater Voice in 2011. For more, see greatervoice.com.
Share your story: Tell us your family’s hearing loss journey at editor@hhf.org.
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workplace
How to Support Those Living With Hearing Loss A health and wellness professional with a hearing loss himself shares advice. By Tony Hollenback Growing up, I remember being told I sit too close to the television, keep the radio volume on too high, and should do a “better job” paying attention when called from another room. In kindergarten during a routine vision and hearing screening, I showed a mild hearing loss, but it didn’t require hearing aids. However, as my hearing loss progressed, I received my first hearing aid at age 15, and my second as a sophomore in college at age 19, and have been wearing bilateral devices ever since. Looking back, it amazes me how many well-intentioned professionals—teachers, employers, and medical and hearing healthcare professionals—are unaware of how to effectively engage, support, and inspire those living with hearing loss to live their best lives. The way our hearing is described as a “loss” also sets the tone for how others perceive us—as though the “loss” of hearing connotes that we are “less than,” “not as good as others,” or are perceived as being less capable, successful, or intelligent as those with typical hearing. This has been a trend and pattern I have experienced my entire life. I recently moved from Illinois to California to take a job in behavioral wellness, which includes improving communication. Here are my recommendations for working with individuals of any age who are deaf or hard of hearing. Awareness. Take the time to understand the nature of someone’s hearing loss (causes, contributing factors) and its impact on their life (such as in school, at work, with their family and other relationships). Culture. Each person’s story about their hearing is different. It’s important to understand it through their eyes, including the emotional impacts such as shame, embarrassment, isolation, avoidance, etc. Be mindful of age as well. A young adult receiving hearing aids may be extra sensitive to changes in appearance. Assessment. When assessing someone’s hearing, think carefully about the questions you ask, how you ask them, and how to maximize their ability to engage in your evaluation. For instance, teachers may tend to speak only with the family/parents of a child with a hearing loss and exclude the child from the process. It’s also important to
I recently moved from Illinois to California to take a job in behavioral wellness, which includes improving communication. Here are my recommendations for working with individuals of any age who are deaf or hard of hearing. explore what’s working and what’s not working, and how you can support the person with hearing loss. Compassion. Recognition and support of a person’s hearing needs are key. You can help someone “heal” from the stigma associated with their hearing loss with affirmation and understanding. A hearing loss does not limit someone’s ability to be successful in all dimensions of their life. Ask about and explore their dreams, goals, and vision for their life. Having a therapist, life coach, or mentor can help with depression/anxiety connected to someone’s hearing as well. Resources. From telephones to captioning services, technology has changed and transformed our ability to be successful. Most communities have social workers or other human services professionals who can suggest resources that are available locally.
Tony Hollenback, LCSW, has three decades of experience working with the community in healthcare settings, schools, and public service. He is the regional manager of behavioral wellness in Santa Barbara County, California.
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Filling in the Gaps By Peter G. Barr-Gillespie, Ph.D.
Hearing Health Foundation’s (HHF) Hearing Restoration Project (HRP) consortium members met over several days in Seattle in December 2019. This extended in-person meeting, held annually with members of HHF’s Board of Directors, facilitates detailed discussion about the progress of the consortium over the past year and develops plans for the upcoming year.
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In 2016 the HRP developed the Seattle Plan, in which we shifted our focus on what the consortium does best: cross-species comparisons of inner ear sensory hair cells and their ability to regenerate, or not. These studies contrast molecular responses to hair cell damage in species that regenerate their hair cells (such as birds and fish) with animals that do not (all mammals including mice and humans). We also directed considerable resources toward determining the epigenetic structure of key genes in the mouse. Epigenetic modifications are chemical changes to DNA that affect whether a gene is “turned on” or “turned off.” Our evidence shows that, in the cells we intend to target to make new hair cells, mouse ears turn off key hair cell genes using epigenetic changes, preventing us from regenerating their hair cells. The goal of the Seattle Plan is to use the information coming from this concerted effort to understand how to develop a strategy to regenerate hair cells in mammals. Stefan Heller, Ph.D., and Tatjana Piotrowski, Ph.D., reported considerable progress on the first major goal, showing the damage response in birds (Heller’s lab) and fish (Piotrowski’s lab). Their single-cell transcriptomics experiments allow us to see the molecular events that occur in both hair cells and supporting cells as the hair cells die, are removed, and then are replaced by supporting cells. The data from these experiments are extremely thorough. While considerably more analysis will be required, the data will ultimately give us a vivid picture of how genes are regulated during hair cell regeneration. Neil Segil, Ph.D., shared that his work on the mouse—examining the epigenetic changes occurring in the inner ear during development, as well as in very young cochlear cells that do show some regeneration—is nearly complete and will be submitted for publication soon. These data crucially reveal one aspect of why hair cells do not regenerate in the adult mouse hearing organ and suggest some therapeutic approaches that may form part of a hair cell regeneration strategy. Reversing the epigenetic block will be essential to coax the mouse supporting cells within the cochlea to convert to hair cells. Seth Ament, Ph.D., discussed the bioinformatics analyses of these cross-species comparisons, an important aspect of the Seattle Plan. His group has shown key gene regulatory networks active during development of hair cells; these gene networks may need to be activated if we are to stimulate hair cell regeneration in adult mammalian cochleas. Ament will be working closely with Heller, Piotrowski, Segil, and others to carry out further bioinformatics dissection of our data. Ronna Hertzano, M.D., Ph.D., shared the ongoing progress of the gEAR website tools, which enable HRP consortium members and other auditory researchers to share, analyze, and compare datasets from many different types of experiments. The gEAR is easy to use and now contains many—if not most—datasets from experiments using the auditory system and is designed for the easy addition of additional datasets. The gEAR website will continue to be a major tool for knitting together the disparate data that the HRP consortium has generated.
research
photo credit: jane g photography (bottom right)
Epigenetic modifications are chemical changes to DNA that affect whether a gene is “turned on” or “turned off.” Our evidence shows that, in the cells we intend to target to make new hair cells, mouse ears turn off key hair cell genes using epigenetic changes, preventing us from regenerating their hair cells. The goal of the Seattle Plan is to use the information coming from this concerted effort to understand how to develop a strategy to regenerate hair cells in mammals. John Brigande, Ph.D., reviewed the success using i-GONAD, a rapid way to inactivate or modify any gene using the CRISPR/Cas9 genome editing approach. i-GONAD will allow Brigande to screen dozens of genes per year to determine whether inactivation can augment regeneration strategies. He discussed additional methods that will allow us to activate genes, a strategy that may be required in order to regenerate hair cells. As a group we decided the Seattle Plan will require at least one more year to gather and analyze all of the data needed for a complete comparison of the damage response in the chick and fish compared with the damage response in the mouse. Our effort will focus on rounding out the data we need for this analysis. We have complete datasets for the chick and fish responses to hair cell death, as well as a thorough description of the epigenetic events that transpire in the mouse during inner ear development. But our understanding of how supporting cells in the mouse cochlea respond—or don’t—to the loss of hair cells, especially in adult mice, is limited. Moreover, we are only now beginning to compare the damage response in human inner ear tissues (in this case, the utricle, a vestibular organ) to that of the mouse. Demonstrating similarities will justify the continued use of the mouse as a model system. We expect that the upcoming year will fill in these gaps, allowing us to identify the next steps in the HRP’s goal of developing therapies for hearing loss.
HRP scientific director Peter G. Barr-Gillespie, Ph.D., is a professor of otolaryngology and the chief research officer and executive vice president at Oregon Health & Science University. For more, see hhf.org/hrp.
Ronna Hertzano, M.D., Ph.D., and Stefan Heller, Ph.D., at the HRP meeting in Seattle.
Support our research: hhf.org/donate
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Data Made Visual The gEAR portal offers an unprecedented way to manage, analyze, and visualize the copious amounts of data generated by Hearing Health Foundation’s Hearing Restoration Project, and beyond. By Christopher Geissler, Ph.D.
1 microgram
Or 1/1,000,000th of a gram of material, is what scientists were able to examine in the mid-2000s.
Over the past several years, Hearing Health Foundation (HHF)’s Hearing Restoration Project (HRP) has generated a significant amount of data. Part of the challenge for HRP consortium members, as for many life scientists, comes not only from the amount of data they need to analyze but also the need to examine multi-omic datasets. “Multi-omic” refers to data related to any of the “-omes”: genome, epigenome, transcriptome, etc., and these data are key to providing a better understanding of the body and its disorders in their full complexity. The work of the HRP is made even more complicated because it is multispecies, with consortium members working on zebrafish, chick, and mouse models. The wealth of data collected is also a result of scientists’ ability to work at ever smaller scales. HRP consortium member Ronna Hertzano, M.D., Ph.D., an associate professor at the University of Maryland School of Medicine, recalls that when she finished her doctorate in 2005, scientists were able to examine 1 microgram of material (1/1,000,000th of a gram). By the time the HRP was founded in 2011, researchers could isolate and examine 100 nanograms of material (or 1/10th of a microgram). Today Hertzano and colleagues can drill down to just 1 to 10 picograms of material, or 0.000001–0.00001 micrograms.
Single Cell Information
100 nanograms
Or 1/10th of a microgram, by 2011.
1 to 10 picograms
Or 0.000001–0.00001 micrograms, today.
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Additionally, copious new data is produced due to the recently developed ability to analyze information from single cells. Scientists are no longer restricted to looking at averages across the ear as a whole. Hertzano uses the metaphor of a classroom to explain single-cell analysis. Let’s say one individual student is the cell type in which you are interested. Before single-cell analysis was possible, to test whether the student’s performance improved after a new teacher joined the class, for example, you would have had to test all the students in the entire school, average the scores, and use that average to estimate how that particular student did. Single-cell analysis is like being able to test each student separately, with their name attached to their exam, while following their individual progress
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photo credit: gurmannat kalra
Data is shared far and wide beyond the HRP consortium. The portal has more than 730 registered users and over 580 datasets have been uploaded, 65 of which are organized in “thematic profiles,” or groups of datasets on related topics.
over time. It facilitates a much more detailed view. Knowing how to detect specific cell types results in a fine-tuned picture of what happens and where things happen in the inner ear when changes are introduced (to stimulate hair cell regeneration, for example). To help manage the data, since 2016 HHF has funded the development of the gEAR portal, which stands for gene Expression Analysis Resource (umgear.org). It has since become the premier tool for data visualization and analysis for all researchers, not just the HRP, working in the hearing and balance field. The online portal enables scientists to analyze multi-omic and multi-species datasets—from their own labs as well as those of colleagues. For Hertzano, who leads the gEAR team, the idea came from feelings of frustration she experienced at conferences, when she realized there was no easy way to compare the data she and fellow researchers were presenting. “Scientists normally share data through journal publications, accessing large tables of raw numbers, which made it very difficult to find what you were looking for or even identify what you were interested in,” she says. Discovering that the teams behind existing data analysis tools had no interest in expanding, Hertzano set about building a new one, starting with hand-drawn “cartoons” of what data visualization would be able to do and what the portal itself would look like. She recruited Anup Mahurkar and Joshua Orvis, colleagues at the University of Maryland Institute for Genome Sciences. “They were willing to embark on this visionary task,” she says. Convinced the project would be invaluable to the field, Hertzano began looking for funders before she even had a working prototype. The HRP consortium and HHF were easily convinced that the gEAR had the potential to change how scientists would work by facilitating data
analysis and data sharing. HHF funded the majority of the gEAR’s development. “HHF advances discovery in the entire ear field by providing access to this data in this way,” Hertzano says, noting that additional funding came from the National Institute on Deafness and Other Communication Disorders. Data is shared far and wide beyond the HRP consortium. The portal has more than 730 registered users, and over 580 datasets have been uploaded (as of January 2020), 65 of which are organized in “thematic profiles,” or groups of datasets on related topics. The thematic profile organization allows users to see how a gene behaves in experiments with related topics (e.g., development, regeneration, adult, brain, etc.). While the gEAR has not been officially published yet, it has been cited in over 20 publications as a tool for hypothesis generation, data comparison, data validation, and hypotheses testing. Hertzano and her team hold several workshops every year. They hosted two at the January 2020 Association for Research in Otolaryngology (ARO) conference, teaching roughly 160 fellow scientists how to use the gEAR in their own work. (See the following story for more about the ARO.)
Data Visualization
Data sharing is one of the organizing principles behind the gEAR; data visualization is another. Data visualization provides graphical representations of data that would traditionally be displayed in tables. Instead of scouring rows and rows of numbers, for example, to find cells with similar characteristics or similar reactions to specific stimuli, plotting the data visually allows scientists to cluster these cell types together according to these characteristics or features. a publication of hearing health foundation
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Created by the gEAR, this figure’s resemblance to North America has made it easier to explain a goal to get from “Florida” (4) to “Cuba” (2).
The similarities are then more immediately evident. To the left is a figure, taken from HRP research, showing the development of cells in a zebrafish embryo five days after fertilization. The figure illustrates the types of cells into which the embryo’s inner cells (stem cells) are being transformed. On the figure’s bottom right in darker green are those cells that have already formed into sensory hair cells. Referring to the graphic’s passing resemblance to North America, Peter G. Barr-Gillespie, Ph.D., the scientific director of the HRP, has jokingly noted that what researchers in hair cell regeneration are looking for is the cells that move “south” from “Florida” (4) to “Cuba” (2)—that is, that continue their development from progenitor cells into young hair cells. The gEAR is also expanding data sharing and data visualization in other fields. It was recently cloned to create NeMO Analytics, or Neuroscience Multi-Omic Archive (nemoanalytics.org). Neuroscientists need to examine millions of cells, versus the tens of thousands of cells that hearing and balance researchers look at. “This is really exciting because we tend to think of tools and methods coming from bigger fields and being adopted by smaller fields,” Hertzano says. “The gEAR is an example of something developed in a smaller field and now being adopted and used productively in a much bigger field.”
Open Source
This type of cloning is possible and encouraged because the gEAR is based on open source code. The platform is malleable, and the gEAR team is always keen to work with researchers in other fields to promote access to data and support research across disciplines. Additional developments and new features to the gEAR itself further serve to support scientists in and beyond the ear field. The intent is to eventually also make the gEAR fully open source itself, so the code and basic structure will be available to anyone who wants it. HHF is proud to support the development of a tool that reflects its underlying mission: to promote research and the dynamic exchange of data and ideas to treat, prevent, and cure hearing loss.
Christopher Geissler, Ph.D., is HHF’s director of program and research support. HRP consortium member Ronna Hertzano, M.D., Ph.D., is an associate professor of otorhinolaryngology–head and neck surgery at the University of Maryland School of Medicine. For more, see hhf.org/hrp. 44
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Making Connections The world’s largest annual conference on hearing and balance science provides a valuable opportunity to share research and exchange ideas. By Christopher Geissler, Ph.D. Nearly 1,800 hearing and balance researchers and related experts gathered Jan. 25–29, 2020, in San Jose, California, for the 43rd annual Midwinter Meeting of the Association for Research in Otolaryngology (ARO), the largest academic association in the field. A number of researchers affiliated with Hearing Health Foundation (HHF) attended, as well as members of our board of directors and scientific advisory bodies, and HHF CEO Timothy Higdon and I attended as HHF staff.
Poster sessions are a powerful way for a large number of researchers to share their work effectively and succinctly with colleagues, providing an exchange of ideas as well as avenues toward potential future collaboration. The daily sessions were so well attended that I sometimes found it challenging to move around the room! The meeting, which is one of the most important opportunities for hearing and balance researchers and clinicians to discuss their research and exchange ideas in person, takes place over the course of four days and includes participants from across the U.S. and the world. The conference is a mix of poster sessions and talks, workshops, symposia, meetings, social occasions, and public outreach. Poster sessions are a powerful way for a large number of researchers to share their work effectively and succinctly with colleagues, providing an exchange of ideas as well as avenues toward potential future collaboration. The daily sessions were so well attended
that I sometimes found it challenging to move around the room! Four current recipients of HHF’s Emerging Research Grants (ERG) program had posters on display—Dunia Abdul-Aziz, Ph.D., Hao Luo, M.D., Ph.D., Vijaya Prakash Krishnan Muthaiah, Ph.D., and Victor Wong, Ph.D.—while a fifth, Ian Swinburne, Ph.D., presented his work as part of a podium session. Alumni of the ERG program were also well represented at poster and podium sessions. Also in town were nearly all members of HHF’s Hearing Restoration Project (HRP) consortium, with Tatjana Piotrowski, Ph.D., Yehoash Raphael, Ph.D., Jennifer Stone, Ph.D., Mark Warchol, Ph.D., and members of the labs of Seth Ament, Ph.D., and Stefan Heller, Ph.D., presenting findings. Consortium member Ronna Hertzano, M.D., Ph.D., hosted a workshop on the gEAR data visualization and gene comparison portal that she and her team developed with major support from HHF (see previous story). The session was so popular that conference organizers decided to add an additional workshop later in the conference. As in prior years, HHF took advantage of the ARO meeting to organize a series of events for affiliated researchers. The HRP held a follow-up dinner meeting swift on the heels of its December 2019 Seattle meeting to dive into draft proposals for the 2020–21 project year. The consortium was joined by members of the HHF Board of Directors’ research committee and staff for a stimulating discussion of projects that aim to launch the HRP’s work into the next phase of its strategic plan. (See page 40 for more about the HRP meeting.) HHF also hosted a reception for ERG awardees and recent alumni as well as members of our Scientific Review Committee and Council of Scientific Trustees (CST). The event is a valuable opportunity to continue relationships with grant recipients and promote the exchange of ideas among grantees, alumni, and HHF. The reception was followed by a dinner meeting at which the CST discussed ongoing efforts to ensure that the ERG program continues to fund the most innovative hearing and balance research. To that end, I was one of the presenters at a session titled “Funding Your Scientific Genius!” We look forward to seeing some of the HHF-funded work shared in San Jose published in the coming months and reviewing future HRP and ERG proposals. HHF also wants to sincerely thank our supporters. Scientific breakthroughs could not be possible without our community of donors who believe in HHF’s mission of preventing and researching hearing and balance conditions.
For more, see hhf.org/research.
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ERG Alumni in the News The cornerstone of Hearing Health Foundation for six decades has been supporting early-career researchers through its Emerging Research Grants program. Many go on to obtain prestigious National Institutes of Health (NIH) funding and make news headlines for their scientific breakthroughs.
‘Chemical Earmuffs’ Could Prevent Hearing Loss
The drug blocked the breakdown that occurs in some synapses between inner ear hair cells and nerve cells when loud noises occur. The approach was like using “chemical earmuffs” that prevented noise-induced hearing loss.
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Once you start to lose your hearing, you can’t get it back. But what if you could prevent hearing loss by blocking in advance the effects of loud noises? That’s a route a team of biologists at the University of Iowa and Washington University, St. Louis, says may be possible after the researchers identified a receptor that, when blocked, can prevent a common type of hearing loss. Receptors are part of a suite of molecules on nerve cells in the ear that bridge the passage of sound and auditory information from inner ear hair cells—the sound sensors—to the brain. The successful transmission of sound from hair cells to nerve cells through synapses is integral to hearing. The researchers identified that some receptors involved in this transmission lack a protein called GluA2, and it is these receptors that are responsible for synaptopathy, or hearing loss caused by synapse damage. The team used a drug, IEM-1460, in mice that selectively blocked the GluA2lacking receptors, preventing the mice from experiencing synaptopathy when exposed to noise. The approach was like outfitting the mice with “chemical earmuffs” that halted the breakdown that occurs in some synapses between inner ear hair cells and nerve cells when loud noises occur. “It wasn’t just putting earmuffs on—these earmuffs prevent the damage caused by loud sounds but don’t muffle the sound,” says Steven Green, Ph.D., a professor in the University of Iowa’s department of biology and a 1996–96 ERG scientist. Green is the corresponding author on the study, published in the journal Proceedings of the National Academy of Sciences in February 2020. The experiments in mice indicate there is the potential to inject a drug that would prevent hearing damage in people before they’re exposed to damaging noise. Conceivably, soldiers who encounter loud sounds in their duties could take a protective drug before the noise exposure, yet still hear commands. “Permanent hearing damage can be caused by noise levels that have been considered ‘safe,’ and people need to be careful about noise exposure because we can’t yet repair synapses or regenerate hair cells,” Green says. “Our chemical earmuffs are, currently, just an indication of the direction research can go, not yet a proven, safe means of protection in humans.” In hearing, a chemical called glutamate is released from hair cells; this chemical transmits sound information at the synapses between hair cells and nerve cells. However, loud sounds or even sustained moderate noise—such as sound coming through earbuds—cause the hair cells to release a glut of glutamate, gumming the synaptic transmission of sound to brain neurons. More specifically, it’s the entry of calcium into the inner ear neurons through GluA2-lacking glutamate receptors that leads to synaptopathy. The researchers identified at the molecular level receptors without GluA2, meaning those terminals that could cause hearing damage by allowing a flow of calcium. Even more, they then learned that if they blocked the receptors without GluA2, the GluA2-containing receptors picked up the slack, and hearing was maintained.
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In the mice experiments, they showed the drug IEM-1460 could target—and block—the receptors without GluA2. “What we found is if you block the GluA2lacking receptors, a.k.a. calcium-permeable receptors, then you can prevent the damage, and the mouse can hear just fine because it still has the GluA2containing receptors that can mediate synaptic transmission,” Green says. “Now, we have a drug that doesn’t prevent hearing, but does prevent hearing damage.” —Richard C. Lewis, University of Iowa
Hearing Loss May Be Preventable With New Drug
The first-ever medication to treat age-related hearing loss could potentially receive FDA approval through a comprehensive study being conducted at the University of South Florida (USF). Robert Frisina, Ph.D., the chair of the USF medical engineering department and director of the USF Global Center for Hearing and Speech Research, and team were awarded a U.S. patent for his theory that you can slow hearing loss by combining supplements for the hormone aldosterone with anti-inflammatory medications, such as aspirin or ibuprofen. Aldosterone is a naturally occurring steroid that influences sodium and potassium regulation in the body, including the inner ear used for hearing. Its level typically decreases as we age, impacting auditory perception. “Our novel idea, embodied in the new patent, involves boosting aldosterone to young adult levels, to make the ear ‘young’ again,” says Frisina, who was a 1987 ERG scientist. The research is part of a five-year, $9 million grant awarded from the NIH to USF’s Global Center. Since its renewal launch in 2016, the study has included preclinical trials on mice. The aging mice received subcutaneous, time-release aldosterone treatments for four months, equivalent to about seven to eight years of treatment for people. Frisina and colleagues found untreated aging mice experienced a 50 percent decline in aldosterone compared with young adult mice. However, following treatment, the levels rose to a near-typical range, and the treated mice did not undergo age-related hearing loss during the study, compared with the control group. Also notably, the supplement did not induce potential negative side effects, such as elevating blood pressure. —University of South Florida
Upcoming Tinnitus Conference Features HHF Researchers
The 28th Annual International Conference on Management of the Tinnitus and Hyperacusis Patient will be June 11–12, 2020, at the University of Iowa. Hubert Lim, Ph.D., will talk about neuromodulation as this year’s guest of honor. ERG alumni Steven Green, Ph.D. (1995–96), will present on the biology of noise-induced hearing loss and tinnitus, and Richard Tyler, Ph.D. (2012), will speak on cochlear implants for tinnitus. Bryan Pollard, the president of ERG funder Hyperacusis Research Ltd., will review advances in understanding pain hyperacusis. For more, see medicine.uiowa.edu/oto/education/conferencesand-events/international-conference-management-tinnitus-and-hyperacusis.
Versions of these stories originally appeared on the University of Iowa’s Iowa Now website, at now.uiowa.edu, and the University of South Florida website, at usf.edu/news. For references, see hhf.org/spring2020-references. a publication of hearing health foundation
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>> hearing aids 101
hearing health foundation
Can I Get My Hearing Tested Online? By Rebecca M. Lewis, Au.D., Ph.D., CCC-A Online hearing tests, or tests you take yourself using a computer or smartphone, are becoming more prevalent and popular, especially alongside the market for “hearables” (smart wireless earbuds or headphones). The current COVID-19 pandemic has also underscored the need for telehealth options across a range of medical specialties, as clinic hours are reduced for less urgent medical needs. And with over-thecounter hearing aids set to become available, these at-home tests will likely keep growing in popularity, too. Given their convenience and availability, but keeping in mind their variability, here is what to consider if you use an online hearing self-test.
>>
Comparing hearing status between two different people: Let’s say that I’m interested in learning about my dad’s hearing status. As an audiologist, I know what my current thresholds are and my dad can take the same online test to compare our results. If I have typical hearing thresholds and I see that my dad’s results from the online test are similar to mine, then I can conclude that his hearing is also typical. If I have typical hearing thresholds and my dad’s results are poorer than mine, then I can conclude that he has decreased hearing abilities and would want to schedule a full in-person exam.
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>>
Monitoring one person’s hearing status over time: Let’s say that I want to keep tabs on my hearing, which I expect will either decline as I get older (more common) or may fluctuate due to some hearing condition like Ménière’s disease (less common). I could use an online hearing test to determine a baseline and compare my own results to that baseline over time to guide me in whether I want to seek a full professional exam. Extra credit for this one would be to get a full evaluation first—and conduct your own online hearing test that same day to compare results and monitor your hearing over time. Changes to the method of the online hearing test can affect results. Because of this variability, it’s recommended to keep the conditions the same as much as possible, such as using a phone each time versus a computer (or vice versa, so long as it’s consistent), using the same headphones, taking the test in the same location/room, and perhaps even taking it at the same time of day to account for routine noise differences. There are also different types of online hearing tests: Some try to copy the audiogram (by measuring thresholds, which is more susceptible to background noise and differences in technology used), while other tests forego thresholds and measure speech in noise, which is more representative of auditory functioning as a whole.
>>
And remember: Besides telling you how much hearing loss you have, an in-person appointment can include checking eardrum movement, acoustic reflexes, and a number of other procedures that can determine if there’s a medical reason for the hearing loss, and if it is medically/ surgically treatable. These are things that an online test or smartphone app cannot do. But if you keep the limitations of these self-tests in mind, they can still act as an easily accessible, initial evaluation of your hearing.
Rebecca M. Lewis, Au.D., Ph.D., CCC-A, is a research audiologist and postdoctoral research fellow with the Geneva Foundation located at Walter Reed National Military Medical Center, Maryland. For references, see hhf.org/spring2020-references.
Share your story: Have you tried an online hearing test? Tell us at editor@hhf.org.
Support our research: hhf.org/donate
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Learn about Hearing Health Foundation’s HRP research consortium investigating hair cell regeneration to treat hearing loss and tinnitus.
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meet the researcher
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Emerging Research Grants (ERG) As one of the only funding sources available for innovative research, HHFâ&#x20AC;&#x2122;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.
EMERGING RESEARCH GRANTS
Meet the Researcher Kristi Hendrickson, Ph.D., CCC-SLP University of Iowa
Hendrickson received her doctorate in language and communicative disorders from San Diego State University/University of California, San Diego, and was a postdoctoral fellow in the department of psychological and brain sciences at the University of Iowa. She is an assistant professor in the department of communication sciences and disorders at the University of Iowa, where she directs the Psycholinguistics Lab. Her 2019 Emerging Research Grant is generously funded by the General Grand Chapter Royal Arch Masons International.
In Her Words children with hearing loss tend to know fewer word meanings than their typical hearing peers. Inconsistent access to speech can affect their ability to recognize the words they hear and associate those words with meaning. This gap in vocabulary skills is crucial because vocabulary is one of the strongest predictors of academic achievement. Semantic memory structure (i.e., how the brain groups concepts with common properties) influences vocabulary knowledge and may be amenable to change through intervention, which may boost language outcomes in children who are hard of hearing. as a speech-language pathologist, I worked with several pediatric populations with hearing loss. At an elementary school I was mentored by an extraordinary speech-language pathologist. Every day I was able to directly impact the lives of children, and these interactions significantly affected my research focus. currently my research is basic science, how the developing brain processes spoken words. However, my background as a speech-language pathologist is always pushing me in a more applied direction. I hope eventually to be able to advocate for children who are hard of hearing by helping to shape policy decisions. people are often surprised to find out that I am a first-generation college student. Transitioning from high school to college was a challenge because I had no idea what to expect. A barrier to success for first-generation college students is having access to family who have 50
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successfully navigated college before them. For instance, it was not until the end of my senior year that I realized I could be directly involved in research. Now I try to recruit and mentor research assistants who are also among the first in their families to attend college. the most memorable moment of my career was submitting my first manuscript with data collected from my lab. It is a daunting task to set up and staff a lab in your first year as an assistant professor, and for me, submitting this first manuscript was when all of that hard work came to fruition. A very wise colleague once told me that it is important to celebrate manuscript submissions (as opposed to manuscript acceptance) because thatâ&#x20AC;&#x2122;s the aspect of the process you can control!
Kristi Hendrickson, Ph.D., CCC-SLP, is a General Grand Chapter Royal Arch Masons International award recipient. Hearing Health Foundation thanks the Royal Arch Masons for their ongoing commitment to research in the area of central auditory processing disorder.
We need your help funding the exciting work of hearing and balance scientists. Please consider donating today to Hearing Health Foundation to support groundbreaking research. Visit hhf.org/how-to-help.
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HamiltonCapTel.com/HHM520 031020 FEDERAL LAW PROHIBITS ANYONE BUT REGISTERED USERS WITH HEARING LOSS FROM USING INTERNET PROTOCOL (IP) CAPTIONED TELEPHONES WITH THE CAPTIONS TURNED ON. IP Captioned Telephone Service may use a live operator. The operator generates captions of what the other party to the call says. These captions are then sent to your phone. There is a cost for each minute of captions generated, paid from a federally administered fund. To learn more, visit fcc.gov. Voice and data plans may be required when using Hamilton CapTel on a smartphone or tablet. Hamilton CapTel may be used to make 911 calls, but may not function the same as traditional 911 services. For more information about the benefits and limitations of Hamilton CapTel and Emergency 911 calling, visit HamiltonCapTel.com/911. Courtesy of Cisco Systems, Inc. Unauthorized use not permitted. Third-party trademarks mentioned are the property of their respective owners. Third-party charges may apply: the Hamilton CapTel phone requires telephone service and high-speed Internet access. Wi-Fi capable. Copyright © 2020 Hamilton Relay. Hamilton is a registered trademark of Nedelco, Inc. d/b/a/ Hamilton Telecommunications. CapTel is a registered trademark of Ultratec, Inc.
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