HYPERACUSIS CENTRAL

Interview with Michael Maholchic, president of Hyperacusis Research

by | May 3, 2024 | Awareness | 3 comments

To celebrate our two year anniversary and to support Hyperacusis Research, we have launched a Facebook fundraiser. Currently all donations to Hyperacusis Research are matched by an anonymous donor! You can donate here

Michael Maholchic has been the president of Hyperacusis Research since 2021. He grants a special interview about the goals and history of all its noble efforts, and how it has affected him, having a son who’s plagued by this condition. He discusses the funds, future and the hopes for change.

For those who are unaware of Hyperacusis Research, can you explain what the organization is and what you do? 

Hyperacusis Research is a charitable corporation organized in the USA to raise awareness and finance research for a cure for hyperacusis, or noise-induced pain.

We are run by a talented eight-member volunteer Board of Directors, all of whom have been affected by hyperacusis. We are advised by a Scientific Advisory Board comprised of leading scientists in the field. We work with other charitable organizations, most notably Hearing Health Foundation (HHF).

How did you first hear about Hyperacusis Research? What made you decide to get actively involved with the organization? 

In early 2014, my son Tom began noticing shocks of ear pain at the restaurant where he worked – for example when dishes would clatter, or when someone would shout at the bar. He was seen by an audiologist who gave him a hearing test (which showed hearing “within the normal range”), and prescribed Tinnitus Retraining Therapy (which didn’t work). Eventually he had to stop working.

Through an internet search he found the Hyperacusis Research website.  We were impressed by the group’s focus on funding research and with the group’s president, Bryan Pollard, who happened to live near us in Massachusetts. We decided to help with fundraising, believing it was better to light a candle than to curse the darkness, and since that time I have been on the board lighting the candle of hope for a cure instead of cursing the darkness that is hyperacusis.

With you being president, and your son having hyperacusis himself, does this change the way you personally deal with sound? Are people in your community more aware of the condition?  

There is so much in our daily life that has changed. My son left his job and gave up his apartment in California 10 years ago to move back to Boston to live with us, his parents. We are much more aware of sound and view noise quite differently than we did before. Tom’s mother is a musician and can no longer play the piano or flute inside the house. We installed triple pane exterior windows, carpeted the kitchen and bathrooms, and bought an electric car, an electric lawnmower and a quiet vacuum cleaner. Tom can retreat to a quiet place while loud activities must happen. Conversations now take place with us standing six feet apart. Walking outside must be done in areas where there is a minimal chance of encountering people, dogs, mowers, or power tools.

All of this is to prevent him from having setbacks or worsening. Not all changes have been bad. Tom has turned out to be a helpful and entertaining roommate to my wife and me. We have Hyperacusis Research events to work on together. His sister and her family have moved close by and we see each other several times a week. I reached out to town officials to discuss possible noise ordinances. We support the Quiet Communities group in Lincoln, MA which encourages urban and suburban localities to address harmful noise. Noise is a health hazard for everyone.

We congratulate Hyperacusis Research on raising $146,000 and the planned gifts leading up to $1.5 million dollars! As patients, we are glad to see more money funding emerging research. What do you believe has driven this recent increase in donations, and how can we keep this going? 

Our group has been around for 13 years, which gives us some visibility and credibility. I believe the work we have done to hold individual fundraisers and our outreach to foundations has driven this increase. The most effective way health nonprofits raise money is through asking people who are affected by the relevant condition – both those who suffer with the condition and their friends and loved ones – personally and individually to help. Telling them of the progress that has been made and what we hope to do with their financial help has been critical.

Last October we hosted a pizza party for friends and family where Dan Polley, PhD, of Massachusetts Eye and Ear Infirmary spoke on the work his lab is doing and how the brain’s natural ability to change its structure, function, or connections after injuries can be used to potentially eliminate the experience of tinnitus and hyperacusis. He was scheduled to speak for ten minutes but the group asked questions for nearly an hour.  Online fundraisers, such as Facebook or Givebutter, are easy to set up, and people often have wide networks of friends that can be easily reached. We have received a lot of media coverage through the efforts of our communication team and with the help of the Tinnitus Hub podcast.

From left to right: Betsy Maholchic, Leslie Liberman, Charlie Liberman PhD, Bryan Pollard and Michael Maholchic

How are you planning to spend this money? Will you fund more emerging research grants in collaboration with Hearing Health Foundation, or do you intend to award research grants on your own? 

Thanks to the higher level of funding now available, we plan to continue our longstanding, valued relationship with Hearing Health Foundation to award a series of Emerging Research Grants at a more accelerated pace. As said above, we want to get the best possible research done as quickly as possible.

Many people want to help out with fundraising, but don’t really know how except for Facebook fundraisers. What would your advice to them be? 

Personalizing the fundraiser by sharing the challenges the patient experiences due to hyperacusis, and how research breakthroughs could improve their lives, is especially important. We encourage everyone who uses Facebook to utilize Facebook fundraisers because it is easy and effective.

My local Rotary club set up an online fundraiser with the Givebutter platform, which we found to be a low-cost and easy-to-use alternative for people who are not on Facebook. We also offer the opportunity to do fundraisers using the PayPal Giving Fund. Details and instructions are on our website.

For people with Donor Advised Funds (DAFs), we are able to gratefully accept contributions from DAFs. Others have remembered Hyperacusis Research in their estate planning. For anyone wishing to do that, one of our board members is an estate planning attorney and can provide assistance.

How do you plan to increase funding/donations in the future? 

We plan to keep working to expand our awareness with patients and their families and friends. Only a fraction of patients on the Facebook support groups have created fundraisers. If we can increase that number, we can grow our funds available for research.

We will continue to apply for grant funding from foundations and organizations that have made it their mission to focus on moving healthcare and medical research forward. 

Where do you see Hyperacusis Research in five years? What are your goals? 

Our mission will be accomplished when we find out exactly why people get hyperacusis, and how they can gain relief from it. This will likely take more than five years. In the meantime, we do what we can to improve the quality of life of sufferers, with social media outreach and news stories, along with outreach to clinicians to make them aware of the reality of hyperacusis.

Like every year, Hyperacusis Research was at ARO. Is there anything you can share from the panel discussion that took place? 

We convened a discussion of researchers, clinicians, and hyperacusis sufferers to help expand and accelerate research that will ultimately result in a cure. We want to make pain hyperacusis a known diagnosis to the 1800 attendees. Because hyperacusis and tinnitus commonly occur together, wider and more connected research into both conditions may be likely to lead to actionable discoveries. We have shared the panel presentations on our YouTube channel and invite people to view the presentations directly. You can also read a summary of the presentations below.

Ken Devore, the Secretary of the Hyperacusis Research Ltd. Board told his story. He developed severe hyperacusis in 1995, with a “light” tinnitus that has become stronger over time. He has had hyperacusis most of his adult life. What has helped: Quiet environments, protecting ears especially when feeling better. He noted a setback in 2011 after noise exposure, which resulted in no longer being able to fly (even with headphones) or attend social events. But he says he still has a good quality of life especially compared to many people with hyperacusis.

Lenny Barad, whose father, Steve Barad, MD, is a member of Hyperacusis Research’s Scientific Advisory Board, offered an update from 2016 forward. He characterized his hyperacusis pain as like dental pain, ’10 out of 10 electrical pain…blinding.’ His sensitivity level is such that he must whisper because even the sound of his own voice is far above his tolerance threshold.

He spoke about profound life changes – finding quieter accommodations, being dependent on others for most daily needs such as shopping, cooking, and cleaning.

Hyperacusis Research board members Jon Wallace, Michal Maholchic and Steven Barad, MD

Wei Sun, PhD, Department of Communicative Disorders and Sciences, University of Buffalo.

Dr. Sun is the winner of the 2024 Hearing Health Foundation Emerging Researcher Grant, funded by Hyperacusis Research, Ltd. His upcoming project will expand on his previous research into a genetic mutation that causes an uncommon form of hyperacusis in children called FOXG1 Syndrome.

This research is relevant because most hyperacusis suffers acquire their sound sensitivity due to a peripheral injury—typically noise, but sometimes infection or exposure to certain chemicals or drugs. It’s thought that dysfunctional information processing in the central nervous system plays a key role in maintaining hyperacusis, particularly pain hyperacusis. In other words, most research supports the role of a chronic dysfunctional central response to a peripheral injury for most cases of hyperacusis. FOXG1 syndrome appears to be an example of a primarily central cause of hyperacusis that is determined entirely or nearly entirely by genetics. Yet, in both cases, the central nervous system may be the key player in maintaining sound hypersensitivity. Further, there are early clues that there may be genetic contributors to one’s probability of acquiring hyperacusis after peripheral exposures. Thus, the importance of understanding the mechanics of how genetic variations mediate functional and dysfunctional sound processing, and what the brain mechanics of FOXG1 syndrome may teach us about the brain’s role in the much more common types of hyperacusis. This may lead to precision therapeutics for both syndromes like FOXG1 as well as for the more common types.

Megan Beers Wood, PhD, Johns Hopkins University School of Medicine.

Dr. Wood is the immediate past recipient of the Emerging Researcher Grant. Her ongoing research focuses on the role of inflammation and calcitonin gene-related protein (CGRP) in noise-induced hyperacusis.

She discussed the focus of the second year of the grant: developing a reproducible animal model for sound-induced pain based on the facial grimace. Her lab was able to mark facial features such as ear, eye, nose, and mouth through the entire 40,000-frame video—enabling them to pull out data in a less biased manner.

Benjamin Auerbach, PhD, University of Illinois, Urbana-Champaign.

A member of Hyperacusis Research Ltd.’s Scientific Advisory Board, Dr. Auerbach’s research interests include learning and memory, neurobiology, optogenetics, and sensory processing. His publications include investigations on animal models of central auditory gain – thought to be important to persistent sound hypersensitivity and pain with hyperacusis.

His fundamental interest is in neuroplasticity (how the brain adapts to the environment), and from a hyperacusis perspective, whether neuroplasticity plays a role in maintaining sound hypersensitivity and pain. His understanding about hyperacusis has evolved from an early belief that hyperacusis is “just” a loudness disorder triggered by cochlear damage—rather it’s a complex disorder with many causes and expression (as loudness, annoyance, fear, and pain – often some combination of these).

His lab aims to leverage the diversity of origin and expression to move towards precision in identifying the links between mechanisms and expressions. An important benefit of animal models is that they offer all these levels of analysis with a range of tools and assessments. The challenge is to model in rodents the diversity that is apparent in humans, so that discoveries in the lab can differentiate among, explain, and provide amelioration or cure for real-life expressions of hyperacusis—i.e., have face validity.

They can induce hyperacusis in different ways and model some aspects of the perceptual components. The goal is to fill in the gaps with approaches such as functional imaging (fMRI to observe brain networks that are activated by sound), in vivo electrophysiology with cell type-specific manipulations, ex vivo approaches to look at synaptic intrinsic properties that are altered in the various models, and at molecular and gene expression that could account for the functional changes.

“We’ve seen more similarities than differences between our models”; for example good evidence for cortical hyperexcitability, recruitment of non-classical auditory areas such as the lateral amygdala, and changes in the acoustic perception and affective responses. This might imply that there are some convergent mechanisms (or, he posited, maybe it just means we don’t have sufficiently sophisticated tools to differentiate them).

Neuronal circuitry of olivocochlear efferent neurons

Catherine (“Cat”) Weisz, PhD, NIH National Institute on Deafness and Other Communication Disorders, is a member of the Hyperacusis Research, Ltd. Scientific Advisory Board. Her work focuses on synaptic transmission and electrical properties of descending neuronal circuitry in the auditory brainstem and cochlea.

She has been thinking about some of the barriers researchers encounter and why hyperacusis research can be difficult, particularly using animal models.

Her research focuses on neurons in the brain stem which can shift the gain of the auditory system (between louder and softer), protect the cochlea against noise-invoked trauma, and appear to be involved in tinnitus and hyperacusis. 

Using tools to do electrical recordings from individual neurons, her lab studies basic electrical properties of synaptic inputs and how they’re connected to the rest of the brain; what are their brainstem inputs; and their outputs in the cochlea. It’s only recently that there have been good tools to access individual neurons in mouse models.

Currently her lab is involved in understanding how the neurons function normally – what they are connected to, how they respond to different electrical inputs. From this it will be possible to expand to how the electrical properties and functions of neurons change with tinnitus and hyperacusis.

There is also research on the brain’s input to these neurons and neural circuits. But single neuron research is challenging because they’re in a part of the brain that has a high density of axons (white matter). To make it easier, they use young animals (3-4 weeks), but it takes some time to evoke hyperacusis, so the question is can they evoke hyperacusis in an animal young enough where they can look at the electrical properties and activity of the cells of interest. The age at which they can do these experiments is currently a limiting factor.

The key questions to answer are how do we give a mouse hyperacusis? What’s the most direct and reliable way? How do we induce hyperacusis that is like the human experience? Are we able to differentiate that from tinnitus?

In closing, she invited more conversations on these topics. A participant offered to explore a knock-out model with hyperreactivity to sound.

Jinsheng Zhang, PhD. Wayne State University, Department of Communication Sciences and Disorders.

His research interests include electrical suppression of tinnitus, development of advanced auditory neural implants, and mechanisms of noise- and blast-induced tinnitus.

In this talk, Dr. Zhang offers a modality he’s been investigating in tinnitus that, according to anecdotal reports, may be beneficial to hyperacusis.  He asked us to hold off on discussing his work for the time being until it is published.

Peter Steyger, PhD, Dr. Richard J Bellucci Translational Hearing Center, Creighton University (Omaha, Nebraska).

He summarized Hyperacusis Research, Ltd.’s current funding relationship with HHF as providing funds to HHF to manage the review and award process for hyperacusis-related ERGs. With this arrangement we don’t need to set up an independent funding organization and its complex logistics.

Hyperacusis Research is a relatively new and growing organization with considerable focus on building visibility, awareness, and impact. One way to facilitate that at ARO would be with an exhibit booth. He emphasized that this is a multi-year sustained strategy.

Funding emerging investigators helps establish their careers. HHF has been running emerging research grants for several decades, with alumni at every career stage. The system requires a stable funding stream—which HHF has done well. Because of this long-term effect, HHF has found that a dollar invested in ERG generates >$50 in research funding over its lifetime.

He said that funding established researchers is likely to move us toward goals more quickly but that requires much more funding and a deep review and process infrastructure. He invited us to consider a consortium model of new and established Principal Investigators (PIs) that could leverage limited funds by working together towards a goal, like HHF is doing with their hearing restoration project.

Logistics to fund meritorious proposals—as he learned from working with HHF. These logistics include dedicated program and scientific review officers. While this involves both money and considerable time/effort, it results in getting proposals you really want to fund. “A lot of people management is involved.”   

3 Comments

  1. Baptiste

    Thanks a lot
    Hope for real relief

    Reply
    • Jon

      Maybe in a hundred years

      Reply
      • star-affinity

        😭

        Reply

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