Board of Directors

In Memoriam: Noel Cohen, M.D.

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Hearing Health Foundation (HHF) shares with great sadness the passing of Board of Directors member Noel Cohen, M.D., who dedicated his career to helping people hear. Cohen was a world-renowned cochlear implant surgeon at New York University (NYU) Langone Medical Center whose contributions as a clinician, scientist, and educator will forever enrich hearing health.

Cohen served as a lieutenant in the U.S. Naval Reserve before completing his ENT residency at NYU School of Medicine and Bellevue Hospital in 1962. Cohen held many leadership roles in the years to follow including professor of otolaryngology at NYU; chair of NYU’s department of otolaryngology–head & neck surgery; acting dean at the NYU School of Medicine; and president of the NYU Hospital Center.

Elizabeth Keithley, Ph.D., the chair of HHF’s board, spoke highly of Cohen’s passion for building the hearing research community by providing opportunities for its youngest members. “He was a strong advocate for funding young investigators through our Emerging Research Grants [ERG] program to help their establishment as academics and scientists,” Keithley says.

Cohen oversaw the ERG grantmaking process as a member of HHF’s Council of Scientific Trustees (CST) prior to joining the board in 2016. Additionally, Cohen and his late wife, Baukje, were committed financial supporters of HHF through their family foundation.

Anil Lalwani, M.D., also a member of HHF’s board and the head of the CST, was a colleague of Cohen’s at NYU He fondly remembers him as “a surgeon instrumental in providing the priceless gift of hearing to countless youngsters and adults who otherwise would still be living in a silent world.”

Cohen will be deeply missed by HHF and the otolaryngology community. We are grateful to Cohen for his immense service to those who study, treat, and live with hearing loss.

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You Can Lead the Way

By Col. John Dillard, U.S. Army (Retired)

Folks like you are the reason Hearing Health Foundation (HHF) has just completed its 60th anniversary year of groundbreaking work toward better treatments and permanent cures for hearing loss and tinnitus. Your donations make it possible.

Tinnitus and hearing loss, respectively, are the number one and number two disabilities reported by returning American military personnel.

Tinnitus and hearing loss, respectively, are the number one and number two disabilities reported by returning American military personnel.

Thank you for everything you do.

Living with noise-induced hearing loss and tinnitus following 26 years of service in the U.S. Army, I strongly share your desire for more scientific developments — both to restore hearing and to prevent its loss.

Every person serving on our Board of Directors is also connected to a hearing disorder in some way and shares our passion for progress. It is coming. As each year passes we learn more and more about key processes in the brain and auditory system.

We’re grateful for these discoveries that bring us closer to hearing regeneration in adult mice (as human proxies for now), and toward new treatments for tinnitus, Ménière's disease, and related conditions. But we know more must be accomplished for all of us to enjoy a better quality of life.

Your generosity can make possible the discoveries we — our veterans, our parents, our children, our spouses, our friends — urgently need.

Please, if you are able, give today to HHF to fund more innovative scientists in 2019-2020 and accelerate much-needed treatments and cures.

HHF will direct 100% of your gift toward the program your choose — Hearing Restoration Project (HRP), Emerging Research Grants (ERG), Ménière's Disease Grants (MDG), or Education. Thank you for your consideration and for being part of our mission.

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With Your Support for Hearing Research, We Can Do Great Work Together

By Sophia Boccard

Your support for Hearing Health Foundation (HHF) inspires me.

I’m thrilled we are moving toward better treatments and cures for hearing and balance conditions together.

I was diagnosed with a hearing loss at age 4 and with Usher syndrome (combined hearing loss and vision loss with balance difficulties) as an adult.

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I know what it is like to be frustrated by something that can make us feel powerless.

Since joining the Board of HHF and following the research programs — the Hearing Restoration Project (HRP), Emerging Research Grants (ERG) and Ménière's Disease Grants (MDG) — I’ve felt empowered.

The HRP has seen the partial regeneration of inner ear hair cells in adult mice and continue their work toward complete regeneration.

ERG and MDG scientists have made discoveries advancing knowledge of tinnitus, Ménière's disease, hyperacusis, Usher syndrome, and auditory processing disorders.

But more progress is needed. With your generosity, HHF can fund more research to accelerate the breakthroughs that will dramatically improve our lives.

Please, if you can, give to our life-changing work. HHF will direct 100% of your gift toward the program you choose. Thank you for your consideration and for being part of our mission.

Warm regards and happy holidays!

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You Are a Masterpiece

By Sophia Boccard

The day before Fourth of July, 2012, the second diagnosis came in. “It’s true, you have Usher syndrome,” announced the retinal specialist. Baffled and unwilling to accept the corroboration of the first retinal specialist’s initial diagnosis, I immediately responded with, “I’d like another opinion—is there anyone you can recommend?” In between both appointments, I had learned that Usher syndrome is the most common genetic cause of combined deafness and blindness.

Credit: Evan McGlinn

Credit: Evan McGlinn

The hearing loss diagnosis was not a new discovery. It had been detected when I was 4; my parents were told I lost my hearing as a reaction to an antibiotic given to me during an emergency surgery. Since then, having moderate to severe bilateral hearing loss meant wearing hearing aids, attending speech therapy classes, and walking around with an assistive FM listening system in school.

Growing up with a hearing loss gave me a new perspective. I had to learn to defend myself against bullies who would occasionally yank my hearing aids and throw them in the trash. And yet, here I was refusing to accept this “other” condition and learning that I had a combined hearing and vision loss diagnosis. After 26 years of thinking otherwise, it was certainly a rude awakening to learn that the hearing loss was not caused by the antibiotic.

Just a few short weeks before, I had been sitting in my optometrist’s office for a routine eye exam to refill my prescription for contact lenses. The optometrist noticed some inconsistencies during my examinations and asked me to stay for more thorough exams. A standard 20-minute visit turned into a two-hour ordeal. After reviewing the results she somberly referred me to the retinal eye specialist who gave me the initial diagnosis.

This retinal eye specialist—who was the first person to utter, “You have Usher syndrome” to me—had the worst bedside manner. I refused to just take his word for it. Immediately after I left his office I cried—a lot—but then regained my composure and made a few calls to see a second retinal eye specialist doctor for a second opinion.

And so on that day in July, even after the second retinal specialist reiterated the first specialist’s diagnosis, I insisted on seeing a third specialist who would prove them both wrong.

I went to the National Eye Institute (NEI), part of the National Institutes of Health, in Bethesda, Maryland, for the third opinion. It was there at the NEI when everything came to a screeching halt and the final diagnosis was confirmed with a genetic test.

The test showed I was born with the mutated gene USH2A, a double recessive genetic disorder that requires both parents to have the exact same copy of the gene. Usher syndrome has three types—types 1, 2, and 3—each with many subtypes such as Usher 2A, Usher 3A, Usher 1F, etc. Combined there are approximately 400,000 people worldwide who have been diagnosed with Usher syndrome. But even with 400,000 people around the world with Usher, there still isn’t enough information easily accessible for individuals who receive this diagnosis.

Sophia and her family.

Sophia and her family.

That day at the NEI launched the next phase of my life. In the biography of my life, the following four years, 2012 to 2016, could be titled “My Wasted Years.” This is when I became a recluse, felt sorry for myself, and cried. Every. Single. Day. I had no way of expressing my sadness or even articulating my feelings, as I didn’t even know what it was I was feeling and how to cope with it.

Those were the years I felt as if I went blind overnight (and let me be clear, I did not go blind overnight—nor will I go blind overnight). I felt like there was this black cloud following me everywhere, hovering over my head and bringing constant rain, making me feel like a drowned rat.

Depression became my reality and my identity. I told a few people about the diagnosis but couldn’t elaborate on the condition since I felt like my world was ending. My desire to live was negligible. How could I imagine life with no sight? What would the quality of my life be like? What would I do without my independence?

These were all questions that ran through my head as the life I imagined living slowly started disappearing from my mind into total darkness. For four long years I asked myself repeatedly, What is the point? What do I have to look forward to?

Then it hit me. Literally. I was walking through Times Square during rush hour, a scenario that can overwhelm most people, when I slammed into someone who screamed into my face, “Watch where you’re going, a**hole!” It was in that instant that an internal shift took over and I shouted back, “Get out of MY way, a**hole!”

It was then I accepted I needed to stop looking at myself as a victim of a mutated gene and to start owning it.

I took a step back and recognized that all this time I had erroneously pitied myself. I felt sorry for my own future and what I was going to lose, and I forgot what it meant to just live life. In preparing for a future with vision loss, I was preparing for an apocalypse that would never come—unless I let it. I needed to stop judging myself and learn to respect myself all over again.

Thus 2016 marked the year of learning to be in control of my own reality, a brand new chapter in this biography of my life. I reached out to the NEI to connect me with someone with Usher syndrome who was willing to exchange emails and stories. Soon after, the NEI introduced me to another patient with USH2A who, after initially being pen (well, email) pals, we became “Ushties” (Usher + besties). Later that year I went to an Usher Syndrome Conference, held by the Usher Syndrome Coalition, in Seattle, and continued meeting many incredible, inspirational people who today are still some of my closest friends.

With these newfound connections I began advocating for both hearing loss and vision impairment communities. Through a friend, I was introduced to Hearing Health Foundation (HHF) and joined their Young Professionals Board for two years before being invited to sit on HHF’s Board of Directors. I also currently sit on the board of the Usher Syndrome Society and am involved with Young Professionals Groups at both the Foundation Fighting Blindness and the Greater New York Chapter of the ALS Association, fighting the progressive neurodegenerative condition known as Lou Gehrig’s disease.

My fiancé and I have also decided to learn American Sign Language as a tool to communicate with new friends from the Usher community. Fundraising and awareness events have started to fill up my calendar. I look at each event as an opportunity to educate those who are unfamiliar with the importance of hearing and vision health and what it means to lose your hearing or your vision, either in part or completely.

For me, it’s the lack of awareness about how the diagnosis of either hearing or vision loss can have an effect on the individual’s own mental health as well as that of their loved ones. There is not enough support for the recently diagnosed. The public isn’t familiar with how to accommodate someone with hearing or vision loss, and since both conditions are not entirely transparent—it’s difficult for people to recognize that they are communicating with an individual with hearing or vision loss —it makes it that much harder to help.

I’m most proud to have the opportunity to teach willing learners that being deaf or blind is not something to pity but rather something to respect. I strive to demonstrate to others that even with our limitations we can still do everything we want, even if we need a little extra help getting there.

Not too long ago someone said to my fiancé, “Sophia is so lucky to have you. You are an incredible person for staying with her even through her diagnosis.” Wait a second, what? My first thought was that my fiancé is the lucky one! To be fair, neither one of us is any more “lucky” than the other. We both equally  deserve each other—and despite comments like these, mostly well-intended (or not), no one will succeed at making me feel less of a person.

While we can each feel insignificant about our own lives when there are so many success stories of extraordinary people pulling off impossible accomplishments despite their limitations, let’s remember that we are each the star of our own story. We are the masterpieces of our own reality.

My story doesn't have a neat ending or a twist, reassuring the reader with a fairy tale conclusion. I’m just here to remind you, my new friend, that I’m not broken. I’m not half of a person; I’m not someone to “fix.” Usher syndrome is a part of who I am, but it is not my identity. I am a human being, who like any and everyone else, is whole and perfect just as I am.

If you have a health condition, don’t let it consume you. Own it. You are the badass who can survive against all odds. People are lucky to have you in their lives. Remind yourself to feel appreciated, get out there, and please, embrace your newfound celebrity status!

HHF board member Sophia Boccard works in digital marketing and lives in New York City. She wrote about an Usher Syndrome Society event she helped organize. This article original appeared in the Spring 2018 issue of Hearing Health magazine. For references, see hhf.org/spring2018-references.

Empower groundbreaking research toward better treatments and cures for Usher syndrome. If you are able, please make a contribution today.

 
 
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HHF Welcomes John Dillard, Retired U.S. Army Colonel, to Board of Directors

By Nadine Dehgan

Hearing Health Foundation (HHF) recently welcomed COL John T. Dillard, USA (Ret) to its  Board of Directors. A Cold War Veteran, COL Dillard lives with tinnitus and hearing loss—the two most common war injuries—as a result of repeated exposure to gunfire and blasts.

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COL Dillard is currently a Senior Lecturer for Systems Acquisition Management at the Naval Postgraduate School (NPS) in Monterey, California, where he has been employed since his retirement from the U.S. Army in 2000. His curricula focus on system developments to advance technology and warfighting capabilities. At the NPS, COL Dillard also counsels young military officers as they cope with the effects of tinnitus including sleep, concentration, and mood issues.

Previously, COL Dillard held positions as an instructor at the U.S. Army War College and an adjunct professor at the University of California at Santa Cruz. In the latter, he educated Silicon Valley public and private industry professionals in Project Management. The full-text versions of his own many written works on managing technology efforts are available on ResearchGate.

In addition to his present role at the NPS, COL Dillard is a Defense Department Consumer Reviewer for the annual Congressionally Directed Medical Research Program for scientific proposals in the areas of tinnitus and noise-induced hearing loss research. COL Dillard says that he "hopes to contribute in a tangible way to HHF’s drive to restore hearing for countless people affected by its loss."

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HHF Welcomes New Board Members in April 2017

By Nadine Dehgan

Hearing Health Foundation (HHF) is delighted to welcome Bob Shannon, Ph.D., and Ruth Anne Eatock, Ph.D., to our Board of Directors. Their unwavering commitment toward advancing research to better understand hearing loss and its associated disorders make Drs. Shannon and Eatock perfect additions to our leadership team.

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Dr. Robert Shannon is a research professor of otolaryngology at the University of Southern California’s Keck School of Medicine with over four decades of experience in researching auditory perception and psychoacoustics. He also serves as an editor and reviewer for several prominent scientific journals and funding agencies and has published more than 100 scientific articles on his research. Most recently Dr. Shannon has been a primary investigator on research studies that advance the technology and effectiveness of the auditory brainstem implant (ABI), an auditory prosthesis for people who have a non-functioning auditory nerve. The ABI is the first device approved by the Food and Drug Administration for prosthetic electrical stimulation of the human brainstem.

“I initially got involved with HHF (then DRF) by joining the Science Review Committee, to ensure the high quality of the research proposals, and later joined the Council of Scientific Trustees,” said Dr. Shannon. “Now I look forward to continued service on the HHF Board of Directors to have an integral role in pushing the Foundation’s research efforts forward.”

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Dr. Ruth Anne Eatock is a professor of neurobiology and the dean of Faculty Affairs for the Biological Sciences Division at the University of Chicago. She trained at McGill, Caltech, the Massachusetts Eye and Ear Infirmary, and MIT, and has held academic positions in otolaryngology and neuroscience departments at University of Rochester, Baylor College of Medicine, and Harvard. She has experience mentoring students, fellows and clinical scientists in sensory processing by the inner ear, reviewing federal and private grant applications, editing and reviewing research papers, and organizing hearing research meetings.  These experiences have given her a broad appreciation of the progress and goals driving our diverse hearing research community.

Dr. Eatock notes: “My first independent grant was a Deafness Research Grant (now known as Emerging Research Grants), so I am well aware of the importance of such seed funding in helping new investigators establish themselves and advance hearing research.”

HHF is excited to have Drs. Bob Shannon and Ruth Anne Eatock as new members of our Board of Directors and we look forward to their contributions toward HHF’s mission. Please join us in giving them both a warm welcome!

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HHF Welcomes Two New Board Members

By Nadine Dehgan

Hearing Health Foundation (HHF) is thrilled to welcome two new board members, Jason Frank and Sophia Boccard. Their unwavering dedication to furthering research and awareness of hearing loss and its associated disorders make Jason and Sophia the perfect addition to our leadership team.

Jason Frank is a Vice President/Assistant General Counsel of JPMorgan & Co. in New York City. Jason and his wife Jenny delved into the world of hearing loss after their son was diagnosed with bilateral, mild to moderate sensorineural hearing loss. When looking for resources, Jason says, “We found HHF and the Hearing Restoration Project and knew we wanted to to get involved…. It has been over five years and, while our son is doing wonderfully thanks to early intervention and access to hearing aids since he was 8 weeks old, we remain committed to spreading awareness for hearing loss and finding a cure. I am extremely excited about joining the National Board and becoming more intimately involved with HHF and its cause.”

Sophia Boccard is a digital marketing strategist in the hospitality industry with over a decade of marketing experience in the entertainment industry. “As someone who was born with moderate to severe hearing loss, I've always accepted the loss of hearing as a part of who I am. After being diagnosed with Usher syndrome type 2a in 2012, I realized that a cure for both hearing and vision was something I needed to fight for,” Sophia says. HHF looks forward to working with Sophia to share her experience living with Usher syndrome to raise awareness and find better therapies and cures.

HHF is excited to have Jason and Sophia as new board members and we look forward to their contributions to HHF’s mission. Please join us in giving them both a warm welcome!

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HHF Board of Directors Elects Elizabeth Keithley, Ph.D. as its new Board Chair

By Elizabeth Keithley, Ph.D.

Elizabeth Keithley, Ph.D., Chairman, HHF Board of Directors                                            Professor Emeritus, Department of Surgery and Otolaryngology

University of California at San Diego

I have been a scientist who does research on mechanisms of inflammation and aging on the inner ear for more than 30 years. Growing up with a mother who had a hearing loss, I understood of the impact that hearing loss can have on a person’s life. It was quite natural that while in college I became interested in neuroscience and specifically the study of sensory perception. A professor asked me to work in his lab on hearing mechanisms and I have been studying them ever since.

In the 1990s I was asked to review the Emerging Research Grant (ERG) applications and that began my association with Hearing Health Foundation (HHF, and formerly known as Deafness Research Foundation). Soon afterward I was asked to join the Board of Directors. I have remained on the Board since that time.

The ERG program is a very valuable asset for the research community by enabling early-stage researchers to get their careers started. This program allows them to write a proposal describing a series of experiments to test a hypothesis that will increase our understanding of auditory or vestibular (hearing or balance) mechanisms. With data generated during the ERG funding period, the researcher can write an expanded, plausible proposal to address a larger issue. This becomes a proposal for funding from the National Institutes of Health.

In some ways the ERG program is a “dress rehearsal” for a career as an academic scientist. When these scientists receive funding from HHF, they have the opportunity to develop their own ideas. They begin to have some independence from a more senior investigator. The best path to achieving a world where everyone can hear is to continue bringing new people with their innovative ideas into the field of hearing and balance research. A review of the names of HHF-funded researchers over the past half century reveals the American leaders in the fields of hearing and balance research from the mid-1980s on.

As of October 1, 2015, I am the Chair of the HHF Board. I am very pleased to be involved with this important organization. HHF was created almost 60 years ago by a woman who was steadfast in her support of funding for new technologies and treatments for hearing loss. I will do whatever I can to ensure we are able to continue to make a meaningful impact through hearing research. 

It is a goal to see HHF raise enough money to fund the Hearing Restoration Project. The consortium model is a wonderful way to focus the attention of scientists to work together collaboratively and get meaningful results. If we can get to the level of funding $5 million to $6 million for research annually, it will give the scientists the resources to further accelerate the pace of the research and produce advances to prevent, treat, and cure hearing loss. Another goal that is equally as important to me is to be able to return our funding levels for the ERG program to $1 million a year. This was the level of funding when I started 20 years ago and I don’t think it is unreasonable to recommit to that amount in the future.

Hearing and balance research and advancements in hearing devices and technology have come a long way over the past 50 years. Significant outcomes have been achieved, but we still have a lot of work to do. The number of people with hearing loss and other hearing-related conditions is increasing and we need to continue to fund the most cutting-edge research until there is a day when every person can enjoy life without a hearing loss or tinnitus.  

I am interested in getting to know the members of our Hearing Health community.  If you have questions or comments, please don’t hesitate to reach out to me via email.  

I look forward to hearing from you.

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Hearing Health Foundation Names Claire Schultz as Chief Executive Officer

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By Tara Guastella

New York, NY (April 29, 2014) - Hearing Health Foundation (HHF), a nonprofit organization dedicated to preventing and curing hearing loss and tinnitus through groundbreaking research, announced today the appointment of Claire Schultz as chief executive officer.

Ms. Schultz comes to HHF with extensive experience in the public and private sectors. She most recently served as the chief external affairs officer of Amnesty International USA, where she was responsible for all revenue development, marketing, communications, digital engagement, and entertainment relations.  At HHF, she will be responsible for strategic leadership and direction of the organization helping to increase its prominence and impact.

Shari Eberts, chair of the board of directors, said, “I am delighted to welcome Claire Schultz as our chief executive officer.  Claire’s depth of leadership and management experience make her uniquely qualified for this vital role.  I am confident that she will galvanize our mission to prevent and cure hearing loss and tinnitus through groundbreaking research through the Hearing Restoration Project, and that she will help navigate a path to build and strengthen HHF with vigor, resolve, and imagination.” 

“It is an honor to be joining HHF and to be working with its forward-looking leadership and the distinguished scientific research community. The mission of HHF is personal for me. As someone with a parent that has hearing loss, I have seen first-hand the challenges a person faces on a daily basis. I am motivated to expedite scientific breakthroughs for the millions of people who live with hearing loss and tinnitus." Claire Schultz said.

Ms. Schultz also previously served as the senior vice president, strategic marketing and communications at JDRF (Juvenile Diabetes Research Foundation) where she launched the organization’s national rebranding initiative, and the JDC (Joint Distribution Committee), where she established the first marketing and communications function aligned with fundraising.  While at JDC, she traveled internationally creating award-winning videos documenting the critical humanitarian needs of the most vulnerable children and the elderly.   Prior to working in nonprofit organizations, Ms. Schultz held management positions at NBC, Inc., Microsoft Corp., and Disney/ABC, Inc.

Ms. Schultz received her B.A in Communications from Tulane University and has a certificate in linguistic studies from University of East Anglia, Norwich UK.  

About Hearing Health Foundation:
Hearing Health Foundation is the largest private funder of hearing research, with a mission to prevent and cure hearing loss and tinnitus through groundbreaking research. Since 1958 Hearing Health Foundation has given away millions of dollars to hearing and balance research, and now through the Hearing Restoration Project is working on a cure for hearing loss and tinnitus. Hearing Health Foundation also publishes Hearing Health magazine, a free consumer resource on hearing loss and related technology, research, and products.

For more information visit: www.hhf.org
Like us on Facebook: www.facebook.com/HearingHealthFoundation
Follow us on Twitter: @HearingHealthFn

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One Woman's Grand Passion for Music

By Yishane Lee

Nancy M. Williams joined the HHF board in March of 2012 and has been an active member since. She coped with the loss as a child, accepted it as an adult, and now has become an advocate for hearing research—all experiences she writes about in the Winter issue of Hearing Health magazine.

Williams has had an interesting career, going from two decades of marketing and management consulting (after earning degrees from Stanford and Harvard Business School), to growing an online music community through her online magazine Grand Piano Passion. She won the 2009 Lamar York Nonfiction Prize for a heart-wrenching essay she wrote about returning to piano playing after a 25-year hiatus, and which has spurred her writing as well as playing.

In her article for Hearing Health, titled “A Grand Passion,” Williams writes:

In kindergarten, after I sang “Three Blind Mice” too loudly on the big rag rug in our classroom, I was diagnosed with a high-frequency hearing loss. My parents, worried about the social stigma, refused the recommended hearing aid, a decision that boomeranged when I reached middle school. “You can’t hear secrets,” complained a girl with green eyeliner at lunchtime. “Don’t sit with us anymore.”  

I was devastated. My parents broke down and had me fitted with an aid, a behind-the-ear model, bulky by today’s standards.

My parents had acted with the best of intentions in a society that tolerated hearing loss even less than ours does today. Yet the incident in the lunchroom stayed with me for a long time. To compensate, I rarely admitted to anyone that I had a hearing loss.

Playing the piano again, and writing about it, and joining HHF led Williams to finally be fully open about her hearing loss. To do it required overcoming decades of shame, which she writes about openly both in our piece and in her magazine.


Williams has also been very involved with helping other musicians with hearing loss. She’s a huge asset to our organization, offering strategic advice and tips both as a businessperson and a consumer who uses hearing aids. We hope that you enjoy her story in the Winter issue, part of a special package about music, musicians, and hearing loss and tinnitus.

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