HHF Earns a Gold!

By Tara Guastella

HHF recently received the GuideStar Exchange Gold participation level, a leading symbol of transparency and accountability provided by GuideStar USA, Inc., the premier source of nonprofit information.  This level demonstrates HHF’s deep commitment to nonprofit transparency and accountability.

We have worked hard to showcase our progress toward our mission of curing hearing loss and tinnitus, and our long-held belief in being transparent about our work, to our constituents.

As a GuideStar Exchange participant, we will use their platform to share a wealth of up-to-date information about our work to our supporters and GuideStar's immense online audience of nonprofits, grantmakers, individual donors, and the media.

In order to be awarded the GuideStar Exchange logo, we completed a comprehensive nonprofit report in order to obtain the Gold level of participation.

We encourage you to check out our profile on GuideStar to see what we're all about. We are engaged in exciting initiatives, and we are thrilled to have another platform for communicating our advancement and progress toward a cure.

About the GuideStar Exchange

The GuideStar Exchange is an initiative designed to connect nonprofits with current and potential supporters. With millions of people coming to GuideStar to learn more about nonprofit organizations, the GuideStar Exchange allows nonprofits to share a wealth of up-to-date information with GuideStar's many audiences. Becoming a GuideStar Exchange participant is free of charge. To join, organizations need to update their report pages, completing all required fields for participation. The GuideStar Exchange level logos, acknowledged as symbols of transparency in the nonprofit sector, are displayed on all Exchange participants' nonprofit reports.

Protect Your Ears (and Health) on St. Patrick's Day

By Yishane Lee

St. Patrick’s Day is a celebration of Ireland’s patron saint, who is credited with bringing Christianity to Ireland. (The three-leaf clover is allegedly how he explained the Holy Trinity.) These days, the holiday is, for better or worse, associated with heavy drinking, and at the risk of dampening the festivities, we thought we should remind readers of the dangers of consuming excessive alcohol and hearing loss.

German researchers reported in the journal Alcoholism: Clinical and Experimental Research that lifelong alcohol consumption damages the brain. Specifically, it leads to brain shrinkage. (Alzheimer’s disease has also been linked to brain tissue shrinkage.)

The disturbing news was that social drinkers with a lighter consumption of alcohol were just at risk as people who drank heavily, although more research is needed. To do their study, the scientists measured brain currents called brainstem auditory evoked potentials (BAEPs) to assess central auditory pathways in a group of 38 men who were undergoing tumor removal or plastic surgery.

Separately, a British report in the journal BMC Ear, Nose, and Throat Disorders found that drinking alcohol blunts lower frequencies—which happen to be the ones you need the most to understand speech.

Combine this with the difficulty people with hearing loss have mastering the “cocktail-party effect”—the ability to discern one person’s speech in the presence of a lot of background noise—and no wonder large, celebratory gatherings involving alcohol are a minefield for people with hearing loss as well as for those trying to protect their hearing. In other words, if you’re on your third or fourth Guinness and can’t understand the Irish bloke shouting about shamrocks (foreign accents are tricky, too!) in a crowded pub, have a tall glass of water next round.

There are yet more risks. Drinking alcohol also causes your blood vessels to expand. This puts you at risk for tinnitus. However, there has also been a hearing-protective effect ascribed to drinking red wine (or eating red grapes). This is due to the presence of resveratrol, a substance found in the skins of red grapes.

The bottom line? There’s no reason not to celebrate St. Patrick’s Day with a pint of Guinness, but as the saying goes, everything in moderation.

The Hearing Restoration Project a Top 5 Nominee in the 5th Annual CLASSY Awards!

By Tara Guastella

The CLASSY Awards, in partnership with the United Nations Foundation, are the largest social impact awards ceremony in the U.S., for the fifth year recognizing champions of social progress.  I am thrilled to report that our Hearing Restoration Project (HRP) has been nominated for a CLASSY award and has been chosen as a Top 5 nominee in the Health Services: Non-Communicable Diseases category!  

CLASSY Award nominees must complete a thorough application process that includes detailed information about the social problem the program is addressing and how the program is making strides for monumental change. Delivering a cure for hearing loss and tinnitus has been and continues to be a top priority at HHF. Now the HRP is being recognized for the contribution we will make to bettering the lives of nearly 50 million Americans with hearing loss and tinnitus through this research.

AOL compares the CLASSYs to the Oscars and we couldn’t be happier to have the HRP receive this type of recognition in the national philanthropy arena. We are so honored to have the HRP highlighted alongside other incredibly inspiring organizations driving social change not only in health services but in all social service categories.

The CLASSY Awards weekend will be held in San Diego, where the award finalists will be announced. The weekend in early May also brings together leaders from across the social sector in a setting that drives collaboration around solving social problems. Team members from HHF will be in attendance at the awards weekend, and we look forward to sharing news about the outcome of the awards race.

Hybrid Cochlear Implants Blend High and Low Frequencies for a Fuller Sound

By Yishane Lee

“Electro-acoustic stimulation” is a mouthful, which may explain why “hybrid cochlear implant” is becoming shorthand for the latest thing in cochlear implantation.

What is a hybrid CI? It is a cochlear implant that makes use of residual hearing in the cochlea, with the goal of preserving it. Lina Reiss, Ph.D., of the Oregon Health and Science University, is a 2012 and 2013 Emerging Research Grant recipient conducting research in hybrid CIs, and she cowrote a piece in our Winter issue of Hearing Health introducing us to this exciting development.

The hybrid is especially promising because it is ideal for people with age-related hearing loss. As the story says:

“The hybrid CI helps people with high-frequency hearing loss while retaining their natural, residual hearing in the low frequencies. A high-frequency hearing loss, like that common in age-related hearing loss, makes consonants difficult to discern. The hybrid CI provides high-frequency information electrically and restores consonant perception. The residual low-frequency acoustic hearing helps ‘round out’ the artificial hearing provided by the CI, and together this gives the user a fuller hearing experience.”

Dr. Reiss collaborated with Christopher W. Turner, Ph.D., of the University of Iowa. Dr. Turner has been involved from the beginning in the development, assessment, and optimization of the hybrid electrode, with more than 20 publications on the subject since 2003, and he is a former HHF grant recipient as well.

One risk of hybrids is losing the low-frequency hearing entirely after implantation. A slightly longer electrode length—shorter than a traditional CI but longer than the initial hybrids—allows the implant to function like a traditional CI if the acoustic hearing is lost. It is undergoing clinical trials and received preliminary FDA approval last November, which is a very good sign.

I asked Dr. Reiss how she became a researcher, and specifically how she came to study cochlear implants. She says:

“I was always interested in science because my father was a scientist. In high school and college, I had some very stimulating research experiences in biological research. I also have a severe-profound hearing loss, and so have a personal interest in auditory research.

“After my sophomore year, I was lucky to obtain a summer research internship working in Eric Young’s auditory neurophysiology laboratory at Johns Hopkins University, where I studied how auditory nerve fibers encode speech sounds. I ended up doing my Ph.D. in that lab, studying how the dorsal cochlear nucleus encodes sound localization cues.

“However, I wanted to do more translational research, so ended up doing a postdoctoral fellowship with Chris Turner at the University of Iowa, where I got involved with the hybrid CI clinical trials. We got a lot of very interesting data with the hybrid CI study, particularly regarding brain plasticity, and there were many other interesting research directions to go on to from there.”

At HHF, we’re definitely excited to see where Dr. Reiss’s curiosity leads.

Catch the ReelAbilities Film Fest in New York City This Week

By Tara Guastella

The ReelAbilities Film Festival kicks off today in New York City and runs through next Tuesday. This is the largest film festival in the country—it includes films that are screened at more than a dozen locations across the U.S.—dedicated to promoting awareness and appreciation of the lives, stories, and artistic expressions of people with different disabilities.

Launched in 2007 in New York City, the festival presents award-winning films by and about people with disabilities in multiple locations throughout each hosting city. Post-screening discussions and other engaging programs bring together the community to explore, discuss, embrace, and celebrate the diversity of our shared human experience.

Festival highlights this year include Lindsey Dryden’s Lost and Sound, which follows three artists who lose their hearing and journey deep into sound and silence to rediscover music, and Sounds for Mazin, which chronicles how a 12-year-old boy with hearing loss looks forward to getting cochlear implants, but his friends make him second-guess the decision.

A special offer for friends of HHF - use code EFDHHF for $3 tickets to Lost and Sound at the JCC in Manhattan!

There are many additional films to enjoy: Check out the schedule for a complete listing and buy your tickets today.

If you’re not in the NYC area this weekend, don’t fret! The ReelAbilities Film Festival makes its way through many cities across the U.S., including Atlanta, Boston, Houston, the San Francisco Bay Area, Washington D.C., and many more. Find out more on the ReelAbilities website.

Closed Captioning: Keeping the Pace

By Kathi Mestayer

“You’ve done your best,” I heard the character on a “Law & Order” rerun say. A few seconds later, the closed captioning read, “You’re under arrest.” The delay was only a few seconds, but it was enough so that I couldn’t listen, read lips, and read the captions at the same time.

When the caption timing is better (which is most of the time), reading, hearing, and lipreading are seamless. But those few seconds’ delay made it impossible, amounting to captioning that was of little value.

I visited the website for the Federal Communications Commission, and entered the information about the show, channel, time, date, and the problem with the captions. Here’s the link. (Scroll down to “Closed Captioning” and then complete the online form.)

About two weeks later, I received a (paper) letter from the FCC to the effect that the report had been received and forwarded to my cable provider, Cox. Within a few days, I got a phone call from a representative from my cable provider, who was concerned about the captioning problem. (She has a hearing loss herself.) She said she would check into it and asked me to let her know if I noticed the captioning was delayed again, and to please note the time, date, and channel, so she could track it down. 

A couple of days later, she called to say it was fixed!  

This was to me astoundingly quick customer service, thanks to the FCC. If you notice a significant delay (or other problem) in closed captioning, report it to the FCC. It can be fixed—but only if someone notices and lets them know.

Hearing Health magazine staff writer Kathi Mestayer serves on advisory boards for the Virginia Department for the Deaf and Hard of Hearing and the Greater Richmond, Va., chapter of the Hearing Loss Association of America.

Meeting of the HRP at ARO Midwinter Meeting

By Tara Guastella

Last Saturday, the second meeting of the year for the members of the Hearing Restoration Project (HRP) consortium occurred. In conjunction with the Association for Research in Otolaryngology (ARO) Midwinter Meeting, the HRP meeting took place in sunny San Diego—a much-needed respite from the frigid temperatures many of us around the country are encountering!

This HRP meeting was unique as it was the first time the Scientific Advisory Board (SAB) of the HRP was invited to attend. During the meeting, scientists for each of the currently funded HRP projects made brief presentations of their research progress. Following each presentation, other consortium members and SAB members took part in lively discussion identifying new ideas and opportunities for collaboration.

The group also had an in-depth discussion about the use of bioinformatics. These are sophisticated computational tools that will allow HRP consortium members to analyze large sets of cross-species data. Bioinformatics is a crucial part of the work of the HRP consortium as it will help identify and compare which genes allow for the natural regeneration of hair cells in animals like chickens and fish, and which genes inhibit this regeneration in animals like mice.

Once we have a clearer understanding around the genetics that allow for hair cell regeneration, we can begin to move into Phase II of our Strategic Research Plan. Phase II centers around using the knowledge gleaned through bioinformatic analysis to trigger hair cell regeneration in mammals—getting us one step closer to a cure for hearing loss and tinnitus.  

Stay tuned for updates on newly funded HRP projects to be announced this spring!

Introducing the Council of Medical Trustees

By Yishane Lee

David S. Haynes, M.D., of Vanderbilt University, has been HHF’s medical director for the past couple of years, advising HHF on medical issues and serving on the Board of Directors and Council of Scientific Trustees. Dr. Haynes recently created HHF’s Council of Medical Trustees (CMT) as an expert panel of more than a dozen otologic and neurotologic physicians and surgeons that HHF can turn to for input regarding medically related issues, and provide comprehensive and up-to-date information about various hearing and balance diseases and conditions. The CMT builds on the long legacy of HHF’s Centurions, a group of medical doctors that had held a similar role.

In the Winter 2014 issue of Hearing Health, we are pleased to highlight the first of many articles about hearing and balance conditions in the magazine by members of the CMT. Dr. Haynes described Ménière’s disease, its definition, diagnosis, symptoms, treatment, outlook, and current research areas.

Two centuries after it was first named, Ménière’s has been a challenge to accurately diagnose, since its symptoms of vertigo, hearing loss, and/or tinnitus can be seen in many other conditions. As Dr. Haynes writes, “Having an experienced doctor who understands the conditions that can present with similar symptoms is essential. Because of the challenges in accurately diagnosing Ménière’s, the diagnosis can sometimes occur by process of elimination.” Another challenge has been determining the cause, although treatments to manage the condition have met with varying degrees of success as well as become less invasive.

The article is in print as well as online.

Two 2013 HHF Emerging Research Grant scientists are also investigating Ménière’s disease.

Peihan Orestes, Ph.D., of the University of California, Los Angeles, is testing the effect of gentamicin use on the contralateral (least affected) ear to stabilize vestibular function in patients with Ménière’s disease, and whether the contralateral ear can be retrained to help normalize vestibular function.

Ian Swinburne, Ph.D., of Harvard Medical School, is studying how the endolymphatic duct and sac stabilize the inner ear’s fluid environment in an effort to identify ways to restore or elevate this function to mitigate or cure Ménière’s disease.

Please have a look at our online dictionary of hearing terms and let us know in the comments below if you have specific areas you’d like us to address.

What Do the Lunatic Fringe, a Cheap Date, Groucho Marx, and the Sonic Hedgehog Have in Common?

By Yishane Lee

At a presentation Hearing Restoration Project scientist Neil Segil, Ph.D., made to a small audience at the HHF offices earlier this year, I was surprised (and delighted) to learn that a gene had the name of Lunatic Fringe—which is not to be confused with the Manic Fringe or the Radical Fringe. Dr. Segil mentioned the gene because it can affect the Notch signaling pathway, a form of cell communication that creates mosaic patterns of different cell types, like the kind we see in the inner ear for hearing. I wondered, how did the gene get this name?

The privilege for people who discover things is that they get to name it—be it a star, mountain, or gene. And the scientists who worked on genetically mapping the fruit fly, which has been studied for over a century, have a sense of humor.

Besides the fringe genes, there are these fruit fly genes that have been found or created: the Tinman refers to a gene that makes it hard to develop a heart; the Groucho Marx refers to a gene that produces excess facial bristles; the Cheap Date gene means the fruit fly is extra-sensitive to alcohol; the Ken and Barbie fruit fly lacks genitalia; and fruit flies with the I’m Not Dead Yet (INDY) gene live longer than usual. (See a list of funny fruit fly gene names.)

The problem, though, is that we discover we actually share quite a lot of ancestry—and therefore, genes—with the fruit fly, including those that cause hereditary diseases, telling a patient that he has a genetic condition related to a mutation in the Lunatic Fringe gene is not going to, well, fly. (Two faulty copies of the Lunatic Fringe gene, which encodes the development of the limbs and other parts of the body, leads to spinal defect known as spondylocostal dysostosis.)

So while these catchy names and the conditions they refer to are easy to remember, a few years ago the Human Genome Organization (HUGO) gene naming committee was petitioned to change them. And, faster than you can say Sonic Hedgehog (another gene name that was changed), the Lunatic Fringe—at least officially—became the LNFG.

Read more about genes related to hearing loss, including the HRP’s use of next-generation DNA sequencing.

Tell us what your favorite gene name is here in the comments!

Ears: The New Fingerprints?

By Tara Guastella

All ears are the same, right? Wrong.

Ears are actually unique to each and every person, so much so that they are comparable in uniqueness to the fingerprint. Research has even suggested that ears may be a more effective identification tool than a fingerprint through the use of a new “image ray transform” technology. This technology shines beams of light on the tubular features of the outer ear, creating an image from the way light reflects off the ear’s curves.

What makes the ear so unique? One’s ears are fully formed at birth and age gracefully over time, making them an ideal body part to confirm identity. Fingerprints can change due to the development of calluses from repeated labor which can make them less reliable.

In almost every crime scene TV drama, you’re likely to see characters dusting for fingerprints. When we will see them dusting for earprints? Well, I guess it’s a lot less likely that your average criminal is pressing an ear against an object while committing a crime. Yet in 1998, the first murder conviction on the basis of ear identification occurred in England. The convicted suspect pressed his ear up against a newly washed window in the house (where the murder took place) to listen for movement.

Airports also regularly use biometric facial recognition programs in their security programs. The addition of earprints to this type of security could also prove a valuable way to identify travelers as well as any potential threats.

Earprints come with limitations when it comes to identification, however. Ears can be altered in shape through plastic surgery or from an accident. Wearing earrings or eyeglasses or having hair pushed behind the ear can also alter the shape of an earprint.

While an earprint will likely will not substitute the fingerprint in terms of identification capability, it could be a valuable addition for solving mysteries, saving lives, and likely many other uses.