Hearing Health Foundation: Advancing the Search for Hearing Loss Cures

Funding cutting-edge researchers, the potential of hair cell regeneration, and the urgent need for a hearing loss cure: I’m excited to share exclusive excerpts from a Q&A I conducted with Timothy Higdon, the President and CEO of Hearing Health Foundation (HHF). HHF is the largest non-profit funder of scientific research in the U.S. dedicated to finding cures for hearing loss, tinnitus, and related conditions. Special thanks to Lauren McGrath, HHF’s Director of Marketing & Communications, for her assistance.

What is Hearing Health Foundation?

HHF was founded in 1958 as the Deafness Research Foundation by Collette Ramsey Baker, whose hearing was restored by surgery. In gratitude for her ability to hear, she founded the organization to develop better treatments and cures for hearing and balance conditions.

HHF has two signature research programs that work in tandem to advance hearing health. The Emerging Research Grants program, established with its founding, identifies and awards funds to innovative, cutting-edge hearing scientists who work to influence better treatments for hearing and balance disorders including tinnitus, hyperacusis, auditory processing disorders, Meniere’s disease, and Usher syndrome.

The second program, the Hearing Restoration Project, was founded in 2011 and is an international consortium of top researchers dedicated to finding cure(s) for hearing loss and tinnitus. HRP scientists work to understand how to regenerate dead or inactive inner ear hair cells in animals with the ultimate aim of replicating this process to restore hearing in humans.

Both programs are overseen by senior scientific advisory bodies comprised of hearing and balance experts based at leading research universities and academic medical centers nationwide. They are accountable to HHF’s Board of Directors, and include scientists, clinicians, and laypeople with personal connections to hearing and balance conditions.

What kind of hearing research is HHF funding now?

HHF’s focus has always been and remains funding the basic science that propels scientific knowledge forward and comprises the building blocks in the development of new treatments, devices, and approaches. Basic science research is foundational and critical to finding cures for hearing loss.

Work on restoring hearing via gene therapy is promising, and certainly inspires interest and excitement in the broader public. HRP-funded projects are working toward identifying the most promising gene mechanism to regrow human inner ear hair cells. Hopefully, this will restore hearing in many people with hearing loss and likely address other hearing-related disorders, such as tinnitus.

ERG-funded projects run the gamut of hearing and balance disorders, since advances in any one area of otology may contribute to advances in another, given the shared biological system in which all these investigators work. Funding early-career researchers, the next generation of scientific leaders, is critically important. The ERG program funds not only innovative projects but also promising researchers who are demonstrating, often early in their careers, the potential to make crucial discoveries and advances in the coming years and decades.

How does HHF see a cure for hearing loss being realized?

HHF expects that a potential cure for hearing loss may be realized through hair cell regeneration. Many instances of hearing loss are sensorineural: caused by the death of sensory cells (hair cells) of the inner ear. Most animals—including birds, frogs, and fish—are capable of regenerating their hair cells after these cells have died. However, mammals—including humans—cannot regenerate hair cells in the cochlea (hearing organ) of their inner ears, making sensorineural hearing loss in humans permanent.

HHF’s researchers do not have a projected timeline for when hair cell regeneration will be ready for clinical trials in humans. Until they reach that stage, HHF is optimistic that many other, significant findings will continue to arise through basic science research, through which many unanticipated discoveries often emerge.

Federal funding support for hearing loss research in the U.S. is low relative to its disease burden and continues to decrease. Additional funding for the Hearing Restoration Project, which is solely focused on this line of research, and the Emerging Research Grants program, which also funds some scientists working on gene therapy and hair cell regeneration issues, will expedite this process.

Why is hearing research not better funded, given the prevalence of hearing loss?

Hearing loss is a great disability, but not a direct cause of death, meaning that more serious health conditions tend to receive more funding. However, hearing loss does present with many comorbidities, like dementia, falls, loneliness, isolation, and depression, which can contribute to early mortality. Further, hearing loss remains in society a “hidden” disability, and hearing aids still widely stigmatized (80 percent of those who could benefit from a hearing aid do not wear one, according to Stanford), meaning that it remains overlooked by funders and policymakers.

What should the consumer do when faced with the question of who to donate money to?

Consumers are strongly encouraged to consider an organization’s financial efficiency, accountability, and transparency before making a charitable contribution. Charity watchdogs like the Better Business Bureau – Wise Giving Alliance, Guidestar, Charity Navigator, and Charity Watch publish impartial nonprofit evaluations to help donors make informed giving decisions. HHF is proud to maintain top rankings from each of these watchdogs as well as having been named as one of Consumer Reports’ annual “Best Charities for Your Money” list for four consecutive years. Every dollar raised is spent efficiently. Through the generosity of HHF’s board, the organization is able to fund vital research without overhead costs to donors.

What take-aways would HHF like to convey to readers?

  • Protect your hearing, because hearing loss is likely to affect you. Sensorineural hearing loss, which occurs when sensory (hair) cells in the inner ear are damaged, is permanent. Preserve your hearing. Hearing loss caused by noise is fully preventable. According to the CDC, hearing loss is the third most common chronic physical condition in the U.S. and is more prevalent than diabetes or cancer. About 48 million people in the U.S., or 15 percent, have hearing loss in one or both ears.
  • Cures are urgently needed, and additional financial support will bring us closer to them. A permanent medical solution to hearing loss will drastically improve the lives of hundreds of millions of people and will protect them from the dangers of untreated or undertreated hearing loss, including cognitive decline, falls, loneliness, and depression. 

Want to get more involved with HHF?

Hough Ear Institute: Small But Mighty

Last month, I had the good fortune to interview Rick Kopke, MD, FACS, the CEO of the Hough Ear Institute (HEI) in Oklahoma City, Oklahoma. HEI, or Hough for short, is a non-profit 501(c)(3) organization with the vision that “all who have ears will hear.” Hough’s mission is three-pronged: hearing restoration research, education (training otolaryngologists), and humanitarian efforts to send doctors to underdeveloped countries to perform ear surgeries. “We’re a small but mighty organization,” Dr. Kopke says. “By God’s grace, we’ve come up with some real breakthroughs.”

The Hearing Loss Pill

The most recent breakthrough is the advancement of a hearing loss pill, which is moving from phase 1 to phase 2 of clinical trials to test for safety and efficacy. An agreement between HEI’s pharmaceutical partner, Auditus LLC (Auditus), a wholly owned subsidiary of Otologic Pharmaceutics Inc. (OPI), and Oblato Inc. (Oblato) made the move possible. “The hearing loss pill was originally designed for use in the military,” Kopke explains. “It was designed to be taken shortly after an explosion, being in a fire fight, or other loud noise to reduce permanent hearing loss.” But HEI’s researchers found an interesting surprise: the nerve endings between the auditory nerve and the inner hair cells, called the synapses, can be regenerated with the pill too. That means it may also help treat tinnitus, the incessant ringing in the ears that plagues many people with hearing loss. 

Although the hearing loss pill was originally developed for noise-induced hearing loss, Kopke says it could also help other groups: those with age-related hearing loss; those who receive antibiotics or other medications that can be toxic to the ear; and cochlear implant recipients, by helping to preserve more of their natural hearing after cochlear implant surgery. “The pill could also improve ability to hear speech in noise – restoring nerve fibers helps to restore hearing,” says Kopke.

Other projects Hough is working on include regeneration of auditory hair cells to restore hearing through gene therapy (a regenerative injection technology), and a new way to deliver drugs to the inner ear. They aren’t pursuing other projects at this point due to the organization’s size. “If you have too many things going on, if you lose your focus, then you stop making progress,” Kopke says.

What Will Future Treatments for Hearing Loss Look Like?

Because there are different types of hearing loss, Kopke anticipates that there will be different treatments in the future – and these might not entail a full restoration of hearing in more severe cases. “There won’t be a silver bullet, a drug that restores all types of hearing loss,” he says. “The causes of hearing loss are so varied and the pathology that underlies sensorineural hearing loss is so varied that there’s not going to be one medication that’s effective in all cases.”

Rather, Kopke thinks the hearing loss pill and other treatments will offer significant partial restoration of hearing. For example, a person with mild hearing loss who would wear hearing aids could receive a regenerative medicine and might not need hearing aids, or someone who might need a cochlear implant could get medicine and might go to using hearing aids. Or for others, they might still need to use hearing aids or cochlear implants, but with the medication, their devices would work much better. “So, I think there will still be hearing aids and cochlear implants, but I think there will be a lot of people who benefit very significantly from these medications if we can take them through phase three of clinical trials,” Kopke says. After phase three, a drug can be approved by the FDA to go on the market.

While this may sound discouraging to people with hearing loss who are hoping to have their hearing fully restored, it’s actually good news that this type of advancement doesn’t seem as far off as before. “I really think the prospects are very good. I’m quite hopeful that our technology, or some of the technology others are working on, will work out and get all the way through phase three.” Kopke says when he started working in the hearing field in the late 1990s, technology companies had almost no interest in funding pharmacological treatments for hearing loss. “But there are now clinical trials and many pharma companies are interested,” he says. “I still think we’re going to get some winners here. It seems like the pace is increasing.”

What Can You Do to Speed Up Development of a Treatment for Hearing Loss?

If you are looking to donate to an organization that is working on hearing restoration research, Kopke says there are many to choose from. “People should take time to do their homework. There are great organizations to donate to,” Kopke says. “See if the organization has a track record of making discoveries and making progress, and don’t feel shy about contacting people before you donate.” Rather than focus on one organization, Kopke says it may be best to spread the wealth when donating. “I think it’s good to support the research broadly, because you don’t know which drugs are going to make it [to market].”  

In addition, it’s important to keep your expectations realistic – if you donate today, a treatment for hearing loss isn’t going to be ready by tomorrow. “Research takes so much time,” he says. “Certainly, with more funding you can speed things up, but it just takes time.”

Kopke says that a major benefit of donations is that they help to keep research going over the long term, which isn’t a guarantee with government funding. HEI has Department of Defense (DoD) funding and has had National Institutes of Health (NIH) grants, as well as OCAST grants from the state of Oklahoma, but “the allocation for research money for DoD and NIH and other granting agencies goes up and down. After a few years, even if you’re doing tremendous work, those monies can dry out. That’s where consistent donors can help keep research moving forward and on track.”

Sometimes it can be hard for donors to give money to an organization when they don’t know what specifically it’s going towards. “Some people like to give to a particular project, or for equipment,” he notes. Currently, Hough is looking for funding for a few different projects: an advanced proof-of-study concept for tinnitus; and to look into tau protein, which causes the nerve cells in the auditory pathway to degenerate over time. And on the equipment side, they need funding for a special freeze-dryer system to help with reliable synthesis of nanoparticles used for inner ear drug delivery. 

Other Ways to Speed Up Development of a Treatment for Hearing Loss

It’s also important for people with hearing loss to share their stories, as people with full hearing often don’t know how much a person can struggle with hearing loss and how much it can affect relationships, education, and work. “We realize that if we help restore hearing we can help restore or improve relationships,” says Kopke. “We are created to thrive in relationships with one another, and sometimes hearing loss can really impair relationships.”

You can also let legislators know, either at the state level or federal level, that you think hearing loss is an important condition that deserves attention and funding. 

Donating to Hough Ear Institute

HEI wants to thank donors for being able to reach the breakthroughs they’ve accomplished, like the hearing loss pill. “We are extremely grateful for the support we’ve had over the years,” Kopke says. “We’ve had donors from all over, and we want to thank people who’ve made our work possible.” 

Hough is now focused on the future and hopefully getting the hearing loss pill through phases two and three. “We are very efficient in the way we use our research dollars and try to stretch them as much as we can,” Kopke says. At the end of the day, the staff at Hough has tremendous motivation to help the hearing loss community. “All our researchers are really driven by passion to help people,” Kopke says. “We love what we’re doing.”To keep that work going, you can donate to Hough Ear Institute, and if you’d like your donation to go to a specific cause, note that in the comments.

The Speed of Science

We live in a world that likes simple, straightforward answers.

“Who won the [insert any sport here] game?”

–“This team won, and the other team lost.”

But the more complex the question, the harder this type of zero-sum response can be.

And when it comes to the question of “When will there be a cure for hearing loss?,” at this point, there’s no easy answer—which doesn’t really square away with our desire for clickbait-worthy headlines (“Scientists CURE DEAFNESS!”) and assertions that are 140 characters or less, including hashtags (“Did you go to too many rock concerts? Now hear this! #hearinglosscure”).

To understand why a cure for hearing loss has been elusive so far, it helps to understand the scientific process. “Science moves incrementally at some level, but the reality is, leaps happen randomly,” says Dr. Tony Ricci, one of the principal investigators (P.I.’s) at the Stanford Initiative to Cure Hearing Loss (SICHL) and professor in the School of Medicine and professor, by courtesy, of molecular and cellular physiology at Stanford University. At SICHL, researchers are looking at multiple approaches to cure different forms of hearing loss, including through regeneration, stem cell therapy, and gene therapy. “So some of these have timelines of a year or two, and some of these have timelines of 10 years,” says Dr. Ricci. “And some of them we try not think about what the timeline is, because you don’t know.”

This can be hard for journalists to write up, since “We don’t know when” doesn’t make a great headline – even if it is the truth.

Science also requires a willingness to experiment, and qualified people to conduct these experiments. Ricci likens the progress of a hearing loss cure to the search for an effective treatment for HIV and AIDS over the past few decades. There wasn’t one researcher with a lot of money who found the answer. Rather, “It was now you had 1,000 people all trying to answer the question,” Ricci explains. “So there were 1,000 shots and there were a couple of hits, and so it moved forward.”

But the caveat is that there aren’t nearly as many people working in the field of hearing research as there were on HIV, partly because hearing loss isn’t fatal. But it’s also because the ear – specifically the cochlea, which, along with the brain, is responsible for hearing – is a difficult body part for researchers to access. “Hearing doesn’t move forward at the same rate as say vision research, because there’s 10 percent of the people doing it,” Ricci says. “You can count on my hands the number of labs that do the experiments that I do in the world, not in the United States.”

Science is also dependent on, well, scientists. Unlike being a brief sensation on Tik Tok, becoming a scientist in the hearing field isn’t something just anyone can do. Regarding himself and his fellow P.I.’s, Ricci says, “To be successful in science, you need really broad training, broader training that what any of us had way back when we were at school. I think this is specifically true in the hearing field.” This also means finding and recruiting the next generation of scientists, a process in itself.

I had thought that a cure for hearing loss was simply about money – and while things are always at least a little bit about money, it goes far beyond that. While we wait for the leap to a cure, the scientific process is actively happening – perhaps without fanfare, but no less important to the overall goal.

You can help accelerate the progress of SICHL by becoming a donor. For information, email Dr. Cliff Harris at cliff.harris@stanford.edu.

The Stanford Initiative to Cure Hearing Loss: Groundbreaking Work in a Too-Neglected Field

Today is World Hearing Day, an annual global initiative from the World Health Organization to promote hearing care and raise awareness of hearing loss. In honor of this day, I’m going to spotlight an organization doing amazing work in the field of hearing research: The Stanford Initiative to Cure Hearing Loss (SICHL).

I was lucky enough to go to the Stanford campus a few weeks ago to meet with three of the researchers – known as principal investigators (P.I.’s) – and the development director of SICHL. I gleaned so much great information that I’ll be writing a SICHL series. For now, I’d start by introducing the organization and their mission.

SICHL was founded 14 years ago by Dr. Robert Jackler, department chair, and Dr. Stefan Heller, a research professor in the otolaryngology department at Stanford University School of Medicine. Dr. Heller’s research career has focused on finding a cure for deafness.

In 2006, when asked in a development meeting if there was anything that would help his research, Dr. Heller said, “Well, if someone could give us 200 million dollars, we could cure deafness in 10 years.” This led to the formation of SICHL and the recruitment of additional inner ear researchers. There are currently six P.I.’s in SICHL who each have their own lab with post-doctoral students who help conduct their studies, as well as the development director who handles fundraising.

One of the unique aspects of SICHL is that each P.I. has an area of specialty – and together, they can make faster progress on their studies because of this. Of the three P.I.’s I interviewed, Dr. Heller’s expertise is in stem cells, Dr. Nico Grillet’s is in genetics, and Dr. Tony Ricci’s is in electrophysiology. “We have experts in different aspects of this [hearing] research,” said Grillet. “And I don’t see any other center that has this.”

The SICHL labs, in one of the Stanford School of Medicine buildings, are situated in a way that fosters collaboration as well. “There’s a rare co-location here, which is very unusual at an academic medical center,” says Dr. Cliff Harris, SICHL’s development director. “There’s a department of physics and engineering, chemistry, and biology, and they are within 100 yards of where we are in the medical school.”

Recruiting qualified Stanford students to help in the P.I.’s labs is core to the success of the organization. “Training the next generation of scientists to be better than us is really important,” says Ricci. “And having resources to put into that is also really important.”

The SICHL researchers have multi-pronged approaches to examining hearing loss. This includes trying to understand how animals, such as birds, can re-grow their damaged inner ear cells, something humans cannot do; seeking ways to stimulate mammalian hair cells to regenerate, currently being done in mice; inventing immensely powerful microscopes to take incredibly detailed photos of hair cells and even watch hair cells in action transmitting sound in a live animal, in order to understand how genetic mutations cause hearing loss; using sophisticated computer modelling to design new experiments that will reveal the intricate functioning of the cochlea; studying fish with transparent brains to peer into the inner ear of animals with similar genetic hearing loss mutations to humans; and devising ways to avoid the hearing loss caused by toxic medications such as chemotherapy and certain antibiotics.

To conduct these experiments takes money – and donations of all sizes are greatly appreciated. Also, larger donations are fantastic because the team can leverage those funds across the various SICHL labs to make collaborative, transformational advances. You can donate to SICHL or learn more about their mission. Or for more details about how your gift can make a difference, email Dr. Cliff Harris at cliff.harris@stanford.edu.

In my next blog post, I’ll be delving deeper into the science of hearing research – and why despite the headlines, a cure probably isn’t just around the corner (but there’s still a lot of exciting stuff happening!).

When Will There Be a Cure for Hearing Loss?

It’s the dream of many (though not all) with hearing loss: a cure for deafness — a way to restore natural hearing, or provide it to some for the first time.

So far, it’s been elusive, and progress seems to move slowly. Partly this is because hearing loss is not easily corrected the way faulty vision can usually be with glasses or contact lenses. While hearing aids have gotten more sophisticated, they still can’t come close to replicating normal hearing, particularly in noisy environments.

However, I think the larger issue is the societal attitude towards hearing loss. It is mostly ignored, seen as an inevitable part of aging, or treated as a personal fault of the patient (“Just listen to me!”). Because it is not taken seriously, the research has not been well-funded or seen as urgent.

It’s surprising to me that in this day and age, advances towards a cure are mostly contained in the realm of non-profits and academia. Some notable organizations include the Stanford Initiative to Cure Hearing Loss in California, Massachusetts Eye and Ear in Boston, and the Hough Ear Institute in Oklahoma. They need outside funding in order to continue their work, meaning they are reliant on donors. As I’ve written before, the NIH doesn’t even list hearing loss as a condition it funds, despite the fact that it’s the third-most common chronic health condition in the U.S.

More recently, some hearing loss research methods have been patented and for-profit companies formed. The Wall Street Journal covered this last year — such companies include Decibel Therapeutics, Frequency Therapeutics, and Akuous, which are all based in Boston.

What is keeping progress from moving forward? This is something that I’ll seek to keep writing about. It’s on the mind of many those with hearing loss, who don’t want to hear that “someday” this will happen. “Someday” can be soon — if more people prioritize hearing loss as a fully curable condition.