News & Events

HHF Endorses California Pediatric Hearing Aids Bill

A young girl speaks at the podium during Assemblyman Bloom’s press conference to introduce his bill to require insurance companies to cover pediatric hearing aids. Credit: Richard Bloom

A young girl speaks at the podium during Assemblyman Bloom’s press conference to introduce his bill to require insurance companies to cover pediatric hearing aids. Credit: Richard Bloom

Hearing Health Foundation (HHF) has formally endorsed AB 598, a bill in California calling for the expansion of hearing aid insurance coverage for children.

California resident Elizabeth Keithley, Ph.D., Chair of HHF’s Board of Directors, recently wrote a letter of support to Assemblywoman Lorena Sanchez, who has stopped earlier versions of the bill. You can read her letter below.

If you live in California and would like to identify and contact your representative about AB 598, you may do so here.


Letter of Support from Elizabeth Keithley, Ph.D.

Dear Assemblywoman Lorena Gonzalez,

Thank you for the leadership you provide to San Diego. I write to you as the Chair of the Board of Hearing Health Foundation (HHF) and Professor Emerita of Surgery/Otolaryngology Head and Neck Surgery at the University of California, San Diego, School of Medicine. I am requesting your support for AB 598, introduced by Assemblyman Richard Bloom, which will require insurance coverage for children’s hearing aids in our state.

HHF is the nation’s largest nonprofit funder of hearing and balance research. Our scientists’ work has led to development of cochlear implants, innovative ear treatments, and progress toward biological cures for hearing loss. We work tirelessly to better the lives of the 50 million Americans with hearing loss.

Beyond research, HHF has been a longtime advocate for Universal Newborn Hearing Screenings, federally mandated in the 1990s. Identifying hearing loss at birth enables parents to promptly pursue intervention for their child. The first six months of a child’s life are the most critical in forming auditory pathways in the brain to hear.

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 $6000 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 21.

This immense financial barrier to treatment result 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 $1M.

Right now, California urgently needs the help of leaders like you to relieve families from the stress of choosing between hearing aids for their children and other health necessities. The strength of the future CA workforce depends on it.

Thank you for your consideration. I truly hope you will act to support California’s children through AB 598.

Sincerely,

Elizabeth M. Keithley, Ph.D.

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What You Made Possible in 2018

By Lauren McGrath

Hearing Health Foundation (HHF) is thrilled to release our new Annual Report, a compact account of Fiscal Year 2018 (October 1, 2017 - September 30). The report’s few dozen pages are symbolically bound between striking images of the inner ears of mice — our small, fellow mammals who continue to show new capabilities in hearing restoration, which will one day be possible for people with hearing loss.

Inside, you’ll find summaries of the most important discoveries that have emerged from our scientists’ labs — in almost all 50 states (see our map of funded institutions on p. 14)! Updates from the Hearing Restoration Project, Emerging Research Grants, and Ménière's Disease Grants programs kick off on p. 28. This work is only possible because of our generous and committed supporters. A few remarkable donors’ stories are highlighted on pp. 6-9, and the full list of those who gave begins on p. 16.

2018 was HHF’s 60th anniversary year, and in celebration of turning “60 years strong,” the report also catalogues some of the notable accomplishments that materialized because of the ambitious vision of our late founder, Collette Ramsey Baker, beginning on p. 10. “My mother made a promise that, if [her hearing loss surgery] worked, she would do something to support research to find the causes of deafness and develop better treatments,” said Ramsey Baker’s daughter, Collette Wynn.

As noted by Board Chair Elizabeth Keithley, Ph.D. in her opening remarks (pp. 4-5), HHF is proud to retain top marks for transparency and use of program funds by all major charity watchdogs. You can review financial information on pp. 38-40 and in our Audited Financials.

We extend our gratitude to all who made possible the work enclosed in this report. Should you have questions about the contents, feel free to contact us at development@hhf.org.

You can read HHF’s FY18 Annual Report here.

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A Home for Hearing Research

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By Neyeah Watson

The National Institute on Deafness and Other Communication Disorders (NIDCD) commemorated 30 years as an institute of the National Institutes of Health in October 2018. Hearing Health Foundation (HHF) is proud to both honor and share in this milestone for the NIDCD, which focuses on biomedical advancements in hearing, balance, taste, smell, voice, speech, and language.

The need for the NIDCD was first championed by Geraldine Dietz Fox, a Philadelphia preschool teacher who, at 27, had developed a sensorineural hearing loss in her left ear from the mumps virus. In her search for resources and treatments, she discovered HHF, at the time known as Deafness Research Foundation, and joined its Board of Directors.

An advocate for hearing loss research, Fox was an influential member of HHF’s board but recognized the need to look beyond its nonprofit resources and toward government funding. Already politically connected by way of her father and husband, who worked on the campaigns of Florida Representative Claude Pepper and U.S. President Ronald Reagan, respectively, Fox headed to Washington, D.C., on behalf of HHF.

She befriended Robert Ruben, M.D., a chairperson for the National Committee for Research in Neurological and Communicative Disorders, a coalition of health agencies and scientists that worked to increase funding for the National Institute for Neurological and Communicative Disorders and Stroke, as it was then known. A four-time Emerging Research Grants (ERG) recipient and otolaryngologist, Ruben had been urging Congress for support of more communication sciences research.

Fox’s new friendship with Ruben and other scientists, combined with her impressive zeal and demeanor as a private citizen with hearing loss, helped her gain an appointment to the advisory committee of the National Institute for Neurological and Communicative Disorders and Stroke in 1986. But Fox was disappointed in the amount of hearing research supported by the institute, and she collaborated with Ruben and Peter Reinecke, a congressional staffer, to move toward crafting a bill for the creation of the NIDCD.

Reinecke worked closely with Pepper, who had a hearing loss of his own, and who teamed up with Iowa Senator Tom Harkin, whose brother had hearing loss. The legislation received bipartisan support and was signed into law by President Reagan in 1988, forming the NIDCD.

HHF’s lasting relationship with the NIDCD has been vital to new discoveries in hearing science. For example, HHF’s ERG program provides seed funding to talented researchers, most of whom go on to expand their research after successfully competing for larger NIDCD research grants. “HHF plays a seminal role in launching the independent research careers of many  scientists in hearing research,” said former NIDCD director James F. Battey, Jr., M.D., Ph.D.

With gratitude to Fox, Ruben, and Reinecke for giving a home to hearing research, HHF is proud to have been associated with the NIDCD’s creation and celebrates the shared commitment to find better cures and treatments for hearing loss and related conditions.

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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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HHF Welcomes Margo Amgott as Interim CEO

By Lauren McGrath

Hearing Health Foundation (HHF) is pleased to begin the New Year with the guidance of Margo Amgott as Interim Chief Executive Officer, succeeding Nadine Dehgan’s dedicated service to the foundation. Margo will lead HHF overseeing operations and working with the Board on a search for a permanent replacement.

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“I am excited to work with HHF’s committed Board of Directors and talented staff to foster support for groundbreaking hearing and balance research,” said Margo, who will champion the start of HHF’s seventh decade of advancing scientific knowledge of hearing loss. HHF has funded research leading to the development of cochlear implant technology and biological hearing restoration in mammals. She added that she is “thrilled to be a part of this vibrant organization supporting life-changing discoveries.”

Board Chair Elizabeth Keithley, Ph.D., remarks, “HHF is delighted to partner with Margo as we continue to nurture cutting-edge research. The Board and I are confident she will be an asset during this time of transition overseeing our operations and helping us to identify the next leader for our dynamic organization.”

With 30 years of nonprofit leadership experience, Ms. Amgott’s professional history includes service to academic medical centers, higher education institutions, government agencies, and healthcare and community nonprofits. Earlier in her career, she directed New York City’s Early Intervention Program and also served as Executive Director of the NYU Child Study Center. She holds a masters degree in health policy and management from NYU’s Wagner Graduate School of Public Administration and a BA in anthropology from Barnard College.

Margo also shares a deeply personal connection with HHF. In 2014, she was diagnosed with a mild unexplained hearing loss and tinnitus in her left ear.

“I welcome the opportunity to work with HHF because of its mission to improve the quality of life for nearly 50 million Americans,” Ms. Amgott says. “I am learning professionally―and personally―from the work HHF does every day. The partnership between our remarkable scientists and our generous supporters has made demonstrable progress towards prevention and cure, and like so many others, I look forward to these vital discoveries.”

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Enter the Caption Challenge

By Lauren McGrath

Captions and subtitles are a critical tool that makes information more accessible to those with hearing loss.

The technology is constantly evolving, especially real-time captioning that can be available on the go, often using smartphones.

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

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

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

Submit an original photo or screenshot of a memorable caption flub, and earn a chance to be featured in the Spring 2019 issue of Hearing Health and on our website.

The deadline has been extended! Visit hhf.org/challenge to review the full contest rules and to enter. Submissions will be accepted until Friday, May 15.

 
 

Note: The contest is open to all individuals 18 years and older who subscribe to Hearing Health magazine via print (in the U.S.) or online (outside of the U.S.). Nonsubscribers are not be eligible for participation and any submission from a nonsubscriber will not be considered. To subscribe to the free quarterly, visit hhf.org/subscribe.

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HHF Maintains 4-Star Charity Navigator Rating and Consumer Reports “Best Charities” Distinction

By Gina Russo

Hearing Health Foundation (HHF) concludes our 60th anniversary year of groundbreaking hearing and balance research with a third consecutive four-star rating from Charity Navigator and a third consecutive designation as a “Best Charity for Your Donation” by Consumer Reports.

HHF’s mission is to prevent, treat, and ultimately cure hearing loss through innovative research. The organization also promotes hearing health through education and awareness programs. HHF funded the discoveries that certain animals are capable of restoring their hearing once deafened, and now works toward replicating this phenomenon in people, while also investigating new treatments and cures for other hearing and balance conditions like tinnitus, Ménière's disease, and auditory processing disorder (APD).

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Consistent accolades from Charity Navigator and Consumer Reports affirm HHF’s life-changing work is carried out with financial efficiency, accountability, and transparency. HHF’s Board of Directors and the organization’s endowment cover all administrative expenses, so donations from generous supporters fully fund hearing loss research and awareness.

Charity Navigator’s 4-star rating, its highest possible, signifies that HHF executes our mission in the most responsible way. The score considers program, administrative, and fundraising expenses, fundraising efficiency, Board policies, and the disclosure of financial records. Fewer than 25% of the 9,000+ nonprofits evaluated by Charity Navigator have received three or more consecutive 4-star ratings.

Consumer Reports’ annual list of the “Best Charities for Your Donation” aggregates data from Charity Navigator along with CharityWatch and the Better Business Bureau (BBB) Wise Giving Alliance to identify organizations most worthy of donors’ support. This year, HHF is the only hearing loss focused charity to earn a placement on the Consumer Reports roster.

As HHF enters our seventh decade of funding critical hearing and balance research, we express our gratitude to those who have given their time and financial resources in pursuit of new treatments and cures. We’re thankful to have your support in our efforts to improve the quality of life for millions of Americans with hearing loss.

If you haven’t yet, and are able to give, please consider an end-of-year donation with confidence HHF will work diligently to ensure your contribution matters.

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Copy of HHF Maintains 4-Star Charity Navigator Rating and Consumer Reports “Best Charities” Distinction

By Gina Russo

Hearing Health Foundation (HHF) concludes our 60th anniversary year of groundbreaking hearing and balance research with a third consecutive four-star rating from Charity Navigator and a third consecutive designation as a “Best Charity for Your Donation” by Consumer Reports.

HHF’s mission is to prevent, treat, and ultimately cure hearing loss through innovative research. The organization also promotes hearing health through education and awareness programs. HHF funded the discoveries that certain animals are capable of restoring their hearing once deafened, and now works toward replicating this phenomenon in people, while also investigating new treatments and cures for other hearing and balance conditions like tinnitus, Ménière's disease, and auditory processing disorder (APD).

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Consistent accolades from Charity Navigator and Consumer Reports affirm HHF’s life-changing work is carried out with financial efficiency, accountability, and transparency. HHF’s Board of Directors and the organization’s endowment cover all administrative expenses, so donations from generous supporters fully fund hearing loss research and awareness.

Charity Navigator’s 4-star rating, its highest possible, signifies that HHF executes our mission in the most responsible way. The score considers program, administrative, and fundraising expenses, fundraising efficiency, Board policies, and the disclosure of financial records. Fewer than 25% of the 9,000+ nonprofits evaluated by Charity Navigator have received three or more consecutive 4-star ratings.

Consumer Reports’ annual list of the “Best Charities for Your Donation” aggregates data from Charity Navigator along with Charity Watch and the Better Business Bureau (BBB) Wise Giving Alliance to identify organizations most worthy of donors’ support. This year, HHF is the only hearing loss focused charity to earn a placement on the Consumer Reports roster.

As HHF enters our seventh decade of funding critical hearing and balance research, we express our gratitude to those who have given their time and financial resources in pursuit of new treatments and cures. We’re thankful to have your support in our efforts to improve the quality of life for millions of Americans with hearing loss.

If you haven’t yet, and are able to give, please consider an end-of-year donation with confidence HHF will work diligently to ensure your contribution matters.

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Cheer for Hearing Loss Research

By Lauren McGrath

Residents of Westport, CT and the surrounding area shopped and socialized at “Cheer for the Hearing Health Foundation” to support life-changing hearing loss research and awareness on Thursday, November 29.

Graciously hosted by Genevieve Bouchard at her women’s clothing boutique, Scout and Molly’s, proceeds from the all-day event benefited both Hearing Health Foundation (HHF) and the Staples High School (SHS) Cheerleaders in Westport.

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The shop was open to the public during the day with 10% of sales supporting HHF and another 10% going to the cheerleading team. In the evening, Ms. Bouchard and the SHS cheerleading team entertained a private group of attendees with food and beverages, raffle prizes, and a silent auction.

The SHS cheerleaders organize a fundraiser annually for their team in conjunction with one nonprofit organization. Ms. Bouchard selected HHF because her two daughters, Katelyn, 12, and Solenne, 10, are cochlear implant recipients.

A presentation from HHF staff was kindly captioned by Lisa Nuland, a Communication Access Realtime Translation (CART) provider at Bedford Middle School in Westport. In addition to giving an overview of HHF’s research, speaker Lauren McGrath highlighted the importance of hearing loss prevention and challenging stigma to an audience of mostly school-age children and their parents.

Genevieve Bouchard (center) with HHF Development Associate Gina Russo and Marketing Manager Lauren McGrath.

Genevieve Bouchard (center) with HHF Development Associate Gina Russo and Marketing Manager Lauren McGrath.

HHF is sincerely grateful to the organizers for the opportunity to share our mission, and thanks the event guests for their interest in our work.

You, too, can host an event to help HHF advance progress toward better treatments and cures for hearing loss. There are many different fundraising event ideas from golf outings and bake sales, to birthdays and weddings, to marathons and triathlons. Email development@hhf.org to plan your event.

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Celebrating the 10th Anniversary of Grace’s Law

By Jeanine and Grace Gleba

In December 2008, a small (Christmas) miracle happened in the state of New Jersey and personally for our family. It’s hard for us to believe that it has been a decade since Governor Richard Codey said these words:

Grace Gleba (red sweater on right) looks on as HAIL is signed into law.

Grace Gleba (red sweater on right) looks on as HAIL is signed into law.

“I want to personally thank Grace and the entire Gleba family for their years of advocacy on behalf of children with hearing loss. Grace’s tenacity, and her own example of what children can achieve with the proper treatment for hearing loss, are a major reason why kids in New Jersey will be able to receive the gift of hearing for years and years to come. Grace and her family have taken personal adversity and turned it into something positive for the people of New Jersey. We all owe her a debt of gratitude.”  

The governor spoke as we witnessed the passage of Grace’s Law S467/A1571. These bill numbers are emblazoned forever in my mind.

Grace’s Law is known as Hearing Aid Insurance Legislation (HAIL) and mandates hearing aid coverage for New Jersey children ages 15 years and younger. For our family and all of the families who advocated in the state capital of Trenton with us, it was a monumental accomplishment. In fact, it took nine years to raise awareness and fight for this law to become a reality. The statistics validate this being quite a feat as only 3 percent of all bills introduced ever become a law!

On the law’s 10th anniversary, here are 10 ways you can celebrate this landmark legislation:

1) Take a few minutes to learn the history of the bill here and here. You can read the original legislation and the most recent pamphlet that the NJ Department of Human Services’ Division of the Deaf and Hard of Hearing has produced explaining Grace's Law. Take note that as a result of the Affordable Care Act, the state has made this an essential health benefit and since 2014 there is no longer a maximum benefit limit of $1,000 per hearing aid (after deductibles, copays etc.). Now that’s something to celebrate—that children now can have even better coverage!

2) Support research toward a biological cure for hearing loss with a contribution to Hearing Health Foundation (HHF)’s Hearing Restoration Project (HRP). The HRP is a scientific consortium studying how fish, birds, and mice regenerate their hearing to replicate this phenomenon in humans.

3) Do you know a child who has benefitted from Grace’s Law and is a shining example that with their hearing aids they have overcome obstacles and achieved great things? Help them join HHF’s Faces of Hearing Loss awareness project. Their participation will show that hearing loss and related conditions can affect anyone.

4) Make a difference in someone else’s life and give the gift of sound by donating old hearing aids to Hearing Charities of America.

5) Wear earplugs for a day to gain a better understanding of living with hearing loss on a daily basis and why getting fitted for proper hearing aids can improve lives.

6) Participate in Walk4Hearing events held nationwide by the Hearing Loss Association of America.

7) Tweet a message showing your gratitude for HAIL. Tag @graceslaw and @hearinghealthfn include a link to this blog post. Here are sample tweets to get you started:

  • For 10 years #GracesLaw #HAIL has helped children in NJ hear. Help spread the word by doing something from the 10 Ways to Celebrate!

  • Millions of Americans experience some sort of hearing loss. #HAIL is needed in every state. #listenupamerica

  • #HAIL Yeah!

  • I’m celebrating #GracesLaw #anniversary by _____________.

  • #GracesLaw improved my/my child’s quality of life by ____________.

  • This year I am thankful for #HAIL #GracesLaw and hearing technology #gratitude

8) Advocate like we did 10 years ago! Last year, President Donald Trump signed into law the Food and Drug Administration Reauthorization Act of 2017, which includes the Over the Counter Hearing Aid Act. Next, we hope Congress will pass federal HAIL for all ages. Hearing loss doesn’t discriminate, so why does insurance coverage? Write your legislators to let them know that this is important to you.

9) Schedule a hearing exam for you or a loved one.

10) Protect your hearing or lose it. People of all ages can be affected by noise-induced hearing loss. Turn down the volume on your electronic devices. Find more ways to protect your hearing.

This article was repurposed with permission from Jeanine and Grace Gleba. Jeanine Gleba serves as a public member on the NJ State Audiology and Speech-Language Pathology Advisory Committee. Grace Gleba is a student in the Schreyer Honors College at Pennsylvania State University, where she is majoring in communications sciences and disorders with a minor in health administration and policy.


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