My Cautious Gratitude

By Lauren McGrath

Clockwise from left: Heather, her daughter, her husband, and son.

Heather Mills never imagined her early adulthood would be interrupted by Ménière's disease, a chronic hearing and balance disorder without a cure. She was diagnosed at 21—just within the typical 20-to-50-year-old range of onset—after a slew of tests and follow-up visits with a specialist at the University of Minnesota.

Heather’s symptoms initially included a unilateral (in one ear) mild low-frequency hearing loss, tinnitus, and some ear pressure and pain. Within a few years, her hearing loss became bilateral and worsened from moderate to severe. She was regularly distressed by intense ear pressure, struggled with her balance, and experienced occasional bouts of vertigo. As Heather learned, Ménière's affects each patient differently. She considered herself fortunate not to face drop attacks (instances of falling to the ground without losing consciousness), one of the most terrifying symptoms associated with Ménière's disease.

Despite its prevalence Heather family, hearing loss—once her most debilitating Ménière's symptom—came as a surprise. Her father has lived with a unilateral hearing loss since childhood, while her mother and maternal grandmother both developed high-frequency sensorineural hearing loss in their late 40s. “It never occurred to me that it may one day affect me, too,” reflects Heather, who can recall her ability to hear whispers across her high school classrooms.

Though she followed her doctor’s directions to take diuretics and maintain a low-salt diet for her vestibular symptoms, Heather chose not to purchase hearing aids. Lacking amplification, Heather faced difficulty in her job as a legal project specialist, which required frequent verbal interaction with clients, lawyers, and vendors both on the phone and in person. She found herself increasingly dependent on a close friend and colleague who truly served as her ears by repeating information for her during and after meetings.

Heather’s untreated hearing loss, combined with her constant fear of a sudden vertigo attack, fueled feelings of isolation. Unable to participate in conversations with friends, Heather stopped receiving invites to social outings. Challenges with work and friends began to affect Heather’s mental health. “I became depressed, lonely, and developed anxiety because of two unknowns: not knowing when my vertigo would strike again, and wondering how I’d continue to work to support my family.”

Heather noticed a sharp decline in her job performance when her helpful coworker—her ears—left the law firm. Part of Heather’s role required instructing staff on new software, and she was humiliated to find out that her trainees’ questions went unanswered because they’d not been heard. “This is when I began to lose confidence in myself,” Heather remembers.

Heather realized she had to address her hearing loss. In line with Hearing Health Foundation (HHF)’s findings in a 2017 survey of more than 2300 participants, cost is by far the largest barrier to a hearing aid purchase. Heather delayed taking action for so many years—11 to be exact—because her insurance provided no hearing healthcare coverage.

“All I can say now is I wish I had gotten hearing aids sooner!” exclaims Heather, who, with newfound confidence, no longer struggles in her daily professional communications and social life. Prior to pursuing treatment, her conversations had soured quickly when she constantly had to ask other parties to speak up, repeat themselves, or remind them of her hearing loss. Most painfully, communication without hearing aids often left Heather dismissed by a “nevermind” when she requested repetition. With her new devices, Heather felt her confidence restored.

Now in remission, Heather considers her life happy and her health stable. Hearing aids have somewhat alleviated her tinnitus, her ear pressure has subsided, and the vertigo spells are very rare. She’s sought treatment for her anxiety and depression. Heather credits her husband, Billy, with whom she has two young children, for his support during her more difficult years. Engaging in online Ménière's support groups has been a beneficial coping tool.

Heather is cautiously grateful for her current health, knowing the unpredictability of Ménière's could alter her circumstances at any time. She hopes for scientific advancements in Ménière's research that will one day uncover the causes, more reliable diagnostic procedures, and a cure.

Heather lives in Minnesota with her husband and children. She is a participant in HHF’s Faces of Hearing Loss campaign.

Painting for a Cure

By Nicolle Cure

My art is the fuel that ignites my passion for helping others. I use my art as a tool to create so that I can support the causes I believe in. Throughout my life, I have created several collections, for the most part biographical. To date, I've been blessed to have the opportunity to collaborate with animal welfare campaigns as well as education and health research initiatives. I am now proudly raising awareness about a particular cause that is dearest to my heart—hearing loss and vestibular (balance-related) disorders—after experiencing these conditions myself.

Nicolle painting in her studio. Credit: Lia Selfridge

On August 4, 2017, I woke up and noticed that the right side of my head was numb. I felt a strong pressure in my right ear and couldn’t hear anything as my ear felt blocked and full. It was really scary and very sudden.

Since that day, I have been in and out the hospital trying to decipher what is wrong with me and how to cure it. My first audiology appointment showed a profound hearing loss in my right ear, and after steroids injected into the middle ear for two months, I was able to recover the ability to hear low frequencies. However, the high frequencies only improved to severe (from profound), which is why I now suffer from tinnitus and I am extremely sensitive to environmental sounds.

My hearing loss was only the beginning. During the initial months, I also suffered from BPPV (benign paroxysmal positional vertigo), debilitating vertigo episodes, chronic migraines, constant nausea, and dizziness. My balance was completely off and I swayed to the right when walking. It felt like I was walking on quicksand. Another symptom that persisted for months was chronic fatigue, to the point that I could not get out of bed on certain days. My body felt heavy as if I had a slab of concrete on top of me.

These “invisible conditions” can really affect patients an emotional level. I was completely isolated from the world, I didn’t want to see anyone, and I avoided phone calls and going out. I’ve always been a very independent person and the fact that I couldn’t do anything or go anywhere made me feel frustrated most of the time.

My boyfriend Felipe, a communications professional and music producer, has been the greatest companion, helping me thrive and heal with his patience and love, and for that I am truly grateful. We share a passion for music and going to concerts, but from the time of my hearing loss I avoid loud places and crowds in general. I know music to him means as much as art to me, so I now wear custom musician’s earplugs. I am also investigating a hearing aid for my right ear, which my audiologist recommended after a recent tinnitus assessment to manage my tinnitus and sound sensitivity. Vestibular rehab therapy helped me regain my balance, as I had difficulty walking or even just standing still.

And of course my art has been my most powerful coping mechanism. While I am in the process of creating, I can focus better and forget about my symptoms. Painting makes me ignore my tinnitus even for a short period of time.

This experience has given me the opportunity to create awareness about invisible conditions. It is a fuel that continues to ignite my passion for the arts and for helping others. It has given me a sense of purpose—I truly feel the need to wake up and create something beautiful to deliver a powerful message of positivism in spite of my symptoms.

In “The Colors of Sound” painting collection, I am trying to capture emotions and moods in sound. Using his recording equipment, Felipe showed me the range of frequencies that I was not able to hear anymore. It was a bizarre experience to be able to see the sound waves and frequencies that I could no longer hear. These ink paintings replicate the energy and movement of what was now missing.

Behind every invisible illness there are wonderful individuals with the will to thrive and heal. Helping others has been incredibly therapeutic for me, and I gained so much support from people, too. I want to create a space for dialogue so people can be open about their conditions and find treatments and relief and know that they are not alone in this journey.

Nicolle Cure is an artist based in Miami. “The Colors of Sound” appeared at Art Basel in Miami Beach (December 2017–February 2018).

A better quality of life for Nicolle—and so many others—is dependent on research funding for HHF’s groundbreaking scientific programs.

Please, if you are able, make a contribution to the research that will someday make it possible for Nicolle and millions of others to reclaim their independence.

New Grantees Will Advance Understanding of Ménière's Disease

By Lauren McGrath

Hearing Health Foundation's (HHF) newly established Ménière's Disease Grants (MDG) program will significantly advance our understanding of the mechanisms of Ménière's Disease. In 2018, two innovators will have the opportunity to investigate the disorder's diagnosis and treatment.

Ménière's Disease is a disorder of the inner ear that causes episodes of vertigo as a result of fluid that fills the tubes of the inner ear. In addition to dizziness and nausea, Ménière's attacks can cause some loss of hearing in one or both ears and a constant ringing sound. The causes of Ménière's remain unknown and a cure has yet to be identified. The National Institutes of Health estimates that 615,000 individuals in the United States live with the disorder.

Two grants have recently been awarded for 2018 for innovative Ménière's Disease research. Both grantees were also previously funded by HHF’s Emerging Research Grants (ERG) program.

Gail Ishiyama, M.D.

Gail Ishiyama, M.D. of UCLA David Geffen School of Medicine is focusing on cellular and molecular biology of the microvasculature in the macula utricle of patients diagnosed with Ménière’s disease. Her project will provide greater information on the blood labyrinthine barrier and allow for the development of interventions that prevent the progression of hearing loss and stop the disabling vertigo in Ménière’s disease patients.

Ian Swinburne, Ph.D.

Ian Swinburne, Ph.D. of Harvard Medical School is classifying the endolymphatic duct and sac's cell types and their gene sets using high-throughput single-cell transcriptomics. His work will generate a list of endolymphatic sac cell types and the genes governing their function, which will aid in Ménière's diagnosis (which can be delayed due to the range of fluctuating symptoms) and the development of a targeted drug or gene therapy.

HHF is grateful for the opportunity to fund Drs. Ishiyama and Swinburne. If you are interested in naming a research grant in any discipline within the hearing and balance space, please contact development@hhf.org.

Audiology Awareness Month

By Morgan Leppla

October is Audiology Awareness Month and Hearing Health Foundation would like to thank audiologists for all they do in diagnosing, managing, and treating hearing loss and other hearing disorders.

Pioneering ear, nose, and throat physiologist, Hallowell Davis may have coined the word audiologist in the 1940s when he decided that the then-common term “auricular training” sounded like a way to teach people how to wiggle their ears. Fortunately, their role in promoting health is far more important than that.

Audiologists diagnose and treat hearing loss, tinnitus, and balance disorders. Some of their main responsibilities include:

• Prescribing and fitting hearing aids

• Being members of cochlear implant teams

• Designing and implementing hearing preservation programs

• Providing hearing rehabilitation services

• Screening newborns for hearing loss

They also work in a variety of settings that include private practices, hospitals, schools, universities, and for the government, like in VA hospitals (run by the U.S. Department of Veterans Affairs). Audiologists must be licensed or registered to practice in all states, the District of Columbia, and Puerto Rico.

Becoming an audiologist requires post-secondary education. One could earn a doctor of audiology (Au.D.), a master’s degree (M.A. or M.S.), or if interested in pursuing a research doctorate, a Ph.D.

The American Academy of Audiology provides a code of ethics that ought to structure audiologists’ professional behavior.  As in other medical professions, audiologists should strive to act in patients’ best interests and deliver the highest quality care they can while not discriminating against or exploiting whom they serve.

Audiologists are principal agents in hearing health. Their contributions to preserving hearing and preventing hearing and balance diseases are crucial to the well-being of millions.

Learn more about hearing healthcare options at “Looking for Hearing Aids? Find the Right Professional First.”

A Balancing Act

By Morgan Leppla

Balancing is pretty great. Not needing to think about how to stand upright is something I yield great benefit from, but is something that occurs without conscious effort or thought. I am fortunate, but many are not. This week is Balance Awareness Week, and HHF is highlighting the the inner ear and its mechanics!

The inner ear is a tiny but notable body part; not only is it important to hearing, but it is also where the balance organs and nerves are located.

The basic components of the inner ear include semicircular canals, the cochlea, the utricle, the saccule, and the vestibulocochlear nerve. The cochlea and one half of the vestibulocochlear nerve (the cochlear nerve) are in charge of hearing. The remaining semicircular canals, utricle, saccule, and vestibular nerve are responsible for balance.

There are three semicircular canals that contain fluid to activate sensory hair cells, which are arranged at ninety degree angles and detect different kinds of movement: up and down, side to side, and tilting. The utricle connects the semicircular canals to the saccule, which also detect motion. They are located in the vestibule inside of the labyrinth, which is the bony outer wall of the inner ear. All of this is the vestibular system.

But it is not only the vestibular system that assists with balance. Vision and sensory receptors (muscles, joints, skin, etc.) all transmit messages to the brain that work together and voila! balance.

Vestibular disorders can have a big effect on one’s equilibrium. People might experience dizziness, vertigo, or imbalance, as well as other inner ear-related issues. A commonly diagnosed  balance disorder is Meniere’s disease, which is one focus areas for our Emerging Research Grant (ERG) recipients.

Balance disorders can disrupt everyday life for those who experience them. It is also fairly common - in fact, about 69 million Americans or 35% of adults aged 40 and up have experiences vestibular dysfunction at some point in their life!

While it might be hard to believe something as tiny as the inner ear can affect a person’s ability to participate fully in daily life, HHF is fully committed to funding research that explores hearing and balance health.

Donate today to support groundbreaking research! 

We need your help in funding the exciting work of hearing and balance scientists.

Introducing HHF's 2016 Emerging Research Grant Recipients

By Morgan Leppla

We are excited to announce the 2016 Emerging Research Grant recipients. This year, HHF funded five research areas:

• Central Auditory Processing Disorder (CAPD): research investigating a range of disorders within the ear and brain that affect the processing of auditory information. HHF thanks the General Grand Chapter Royal Arch Masons International for enabling us to fund four grants in the area of CAPD. 
   
• Hyperacusis: research that explores the mechanisms, causes, and diagnosis of loudness intolerance. One grant was generously funded by Hyperacusis Research.
   
• Méniere’s Disease: research that investigates the inner ear and balance disorder. One grant was funded by the Estate of Howard F. Schum.
   
• Stria: research that furthers our understanding of the stria vascularis, strial atrophy, and/or development of the stria. One grant was funded by an anonymous family foundation interested in this research.
   
• Tinnitus: research to understand the perception of sound in the ear in the absence of an acoustic stimulus. Two grants were awarded, thanks to the generosity the Les Paul Foundation and the the Barbara Epstein Foundation.

To learn more about our 2016 ERG grantees and their research goals, please visit hhf.org/2016_researchers

HHF is also currently planning for our 2017 ERG grant cycle. If you're interested in naming a research grant in any discipline within the hearing and balance space, please contact development@hhf.org.

2011 Grant Recipients Announced

FOR IMMEDIATE RELEASE                                                                                                  
July 26, 2011                                                                                                                      

Contact:
Trisha Donaldson
212-257-6143
tdonaldson@drf.org
www.drf.org

DRF Increases grantmaking:  2011 Grant Recipients Announced

Deafness Research Foundation (DRF)’s National Hearing Health Grants Center is excited to announce that it has awarded over $600,000 to 25 outstanding research scientists in the field of hearing and balance science.  For two years in a row, we are excited to announce an increase in our grantmaking.

Each year, DRF awards research grants to young investigators who are exploring new avenues of hearing and balance science. These funds will support research in the following areas:

• Fundamental Auditory Research – development, genetics, molecular biology, physiology, anatomy, and regeneration biology;

• Hearing and Balance Restoration – infants, children and adults

  • cochlear implant, auditory hair cell regeneration, and auditory nerve regeneration;

• Hearing Loss – aging, noise-induced, otosclerosis, ototoxicity, and otitis media;

• Central Auditory Processing Disorder;

• Usher Syndrome; and

• Vestibular and Balance Disorders (dizziness and vertigo, Meniere's disease).

For this year's grants selection, DRF's Council of Scientific Trustees reviewed applications from scientists at renowned research institutions around the U.S.  The selected research projects received detailed peer review for scientific merit and program relevance.  A complete list of the 2011 grant recipients is provided below, including recipients whose research is funded in whole or part by the DRF Centurion Clinical Research Award, the C.H.E.A.R. Endowment Award, Collette Ramsey Baker Research Award, and The Todd M. Bader Research Grant of The Barbara Epstein Foundation, Inc.

FIRST YEAR HEARING & BALANCE RESEARCH GRANT RECIPIENTS
Keith E. Bryan, Ph.D., University of Iowa, Carver College of Medicine
Investigating the role of cabp1 in kcnq4 channel modulation

Brenton G. Cooper, Ph.D., Texas Christian University
Lateralization of acoustic perception in Bengalese finches

Regie Lyn P. Santos-Cortez, M.D., Ph.D., Baylor College of Medicine
Identification of genes that predispose to chronic otitis media in the at population of Bolabog, Boracay island, Philippines

Elizabeth Dinces, M.D., M.S., Albert Einstein College of Medicine
Effects of aging on selective attention in complex multi-source sound environments

Carolyn P. Ojano-Dirain, Ph.D., The University of Florida College of Medicine
Prevention of aminoglycoside-induced hearing loss with the mitochondria-targeted

Sung-Ho Huh, Ph.D., Washington University School of Medicine
Role of fgfs in cochlear sensory epithelium

Albena Kantardzhieva, Ph.D., Massachusetts Eye and Ear Infirmary
Defining the interaction partners of major proteins in the hair cell's synaptic ribbon

Shuh-Yow Lin, Ph.D., The University of California, San Diego School of Medicine
Molecular mechanisms of synaptic transmission in hair cells

Debashree Mukherjea, Ph.D., Southern Illinois University School of Medicine
Targeting inflammation in prevention and treatment of noise induced hearing loss

Erin K. Purcell, Ph.D., The University of Michigan, Kresge Hearing Research Institute
A stem cell-seeded nanofibrous scaffold for auditory nerve regeneration

Zlatka P. Stojanova, Ph.D., House Research Institute
Epigenetic regulation of the atoh1 gene

Jie Tang, Ph.D., Creighton University School of Medicine
Creation of a pendrin with both motor and transport functions

Ellen S. Wilch, Ph.D., Michigan State University College of Human Medicine
Identification of cis-regulatory gjb2 and gjb6 elements by chromosome conformation capture and investigation of potential cis-regulatory variants in persons with hearing loss and monoallelic mutation of gjb2

Hsiao-Huei Wu, Ph.D., The University of Southern California, Keck School of Medicine
Regulation of inner ear development by hgf, the nonsyndromic hearing loss gene, dfnb39

SECOND YEAR HEARING & BALANCE RESEARCH GRANT RECIPIENTS
Edward L. Bartlett, Ph.D., Purdue University
Cellular bases of temporal auditory processing

Soyoun Cho, Ph.D., Oregon Health & Science University
Dynamics of exo- and endocytosis at hair cells

Frances Hannan, Ph.D., New York Medical College
The role of diaphanous in the auditory cytoskeleton

Michelle Hastings, Ph.D., Rosalind Franklin University of Medicine and Science
Therapeutic correction of ush1c splicing in a mouse model of usher syndrome

Zhengqing Hu, M.D., Ph.D., Wayne State University School of Medicine
Innervation of in vitro-produced hair cell by neural progenitor-derived glutamatergic neurons

Judith S. Kempfle, M.D., Massachusetts Eye and Ear lnfirmary
Influence of bone morphogenetic protein 4 and retinoic acid on differentiation of inner ear stem cells

Neeliyath A. Ramakrishnan, Ph.D., Wayne State University School of Medicine
Molecular interactions of the hair-cell afferent synapse

DRF CENTURION CLINICAL RESEARCH AWARD RECIPIENT

James E. Saunders, M.D., Dartmouth Hitchcock Medical Center
Genetic hearing loss in remote Nicaraguan families

This research award is funded by the Centurions of the Deafness Research Foundation. DRF has partnered with CORE Grants Program of the American Academy of Otolaryngology-Head and Neck Surgery (AAO-HNS) to offer a one-year DRF Centurion Clinical Research Award (CCRA) for clinical research in hearing and balance science.

DRF C.H.E.A.R. ENDOWMENT GRANT RECIPIENT

Patricia White, Ph.D., University of Rochester School of Medicine and Dentistry
1st year grant recipient
The role of foxo3 in hearing protection

The C.H.E.A.R. endowment was created to support an annual sensory-neural Deafness Research Grant. C.H.E.A.R. (Children Hearing Education and Research) was absorbed into DRF in 1991, and we are very proud to continue their legacy of funding research in sensory-neural deafness.

COLLETTE RAMSEY BAKER RESEARCH AWARD RECIPIENT

Kirill Vadimovich Nourski, Ph.D., M.D., University of Iowa Hospitals and Clinics
1st year grant recipient
Temporal processing in human auditory cortex
This research award is made in memory of Deafness Research Foundation’s founder, Collette Ramsey Baker.

THE TODD M. BADER RESEARCH GRANT OF THE BARBARA EPSTEIN FOUNDATION, INC., RECIPIENT

Marcello Peppi, Ph.D., Massachusetts Eye and Ear lnfirmary
2nd year grant recipient
Molecular mechanisms of dexamethasone-mediated protection from acoustic trauma
This research award is funded by The Todd M. Bader Research Grant of The Barbara Epstein Foundation, Inc.

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Deafness Research Foundation is the leading national source of private funding for research in hearing and balance science.  Research made possible by DRF grants has resulted in dramatic innovations that have increased options for those living with hearing and balance disorders, as well as protected those at risk.  Since our inception in 1958, we have awarded over $26.6 million through more than 2,000 scientific research grants to researchers who are dedicated to exploring new avenues of hearing and balance science.  With the potential of hearing restoration through regeneration biology, the scope of DRF-funded research has expanded enormously.  Since 1972, DRF has funded close to 40 research grants that have been instrumental in the development, evaluation and improvement of cochlear implants.  Approximately, 188,000 implant procedures have been completed worldwide with beneficial results, particularly when the procedure is undertaken in infants.  DRF also publishes the award-winning Hearing HealthMagazine.

www.drf.org
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