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"Overnight successes" take the world by storm, usually in the form of chart-topping hits or movies, but behind the successes are years – or even decades – of hard work.
The same can be said for the sciences. COVID-19 vaccines, which seemed to appear from nowhere, were the result of decades of investment and incremental progress in mRNA technology. For members of the misophonia community, 2022 may have felt like an "overnight success" but it's been built on at least two decades of incremental progress to steadily build the foundation of scientific knowledge about a mysterious disorder.
Misophonia is a poorly understood disorder in which people demonstrate decreased tolerance to specific sounds, like hearing someone eat, or a pen clicking. As many as one in five people find some stimuli, known as triggers, to be distressing enough that they experience strong negative emotional, behavioral, and physiological responses. Misophonia isn't yet recognized as a disorder by the medical community, which means clinicians can't bill insurers for the necessary treatment they provide to sufferers. But for those who experience symptoms, misophonia is very real and causes severe distress and disability.
Misophonia was named at the turn of the 21st century, but the scientific field lacked dedicated funding for nearly 20 years, and saw little progress in understanding or treating the disorder. In 2019, a new philanthropic research fund was established to change the status quo. The Misophonia Research Fund (MRF) is dedicated to advancing breakthroughs and ending suffering for people with misophonia. Now entering its fifth funding cycle, the MRF has transformed the research landscape, committing more than $9.5 million in scientific grants to a field that previously lacked any dedicated funding.
Progress for Misophonia Research
2022 has been a year of major progress for misophonia research. This included the release of a consensus definition of the disorder, hundreds of scientific articles, and the first ever collection of scientific research about misophonia.
These scientific advances are critical because they provide clarity about the features and development of misophonia and lay the foundation for developing and testing treatments and therapeutic interventions. 2022 also saw key developments in raising awareness about misophonia, with the release of multiple news articles, podcasts, and scholarly commentaries about the field's progress. Building awareness of uncommon disorders is important so that parents, caregivers, physicians, therapists, and teachers can recognize signs and symptoms early and increase the likelihood of early intervention before the disorder worsens.
This progress in misophonia is the story of medical philanthropy in action. It's the story of a commitment of the strategically designed MRF, which operates around four intentional strategies: 1) to focus on interdisciplinary science and collaboration; 2) to build the fundamental understanding of misophonia; 3) to support the development of diagnostic tools; and 4) to drive increased rigor in clinical trials.
How did philanthropic investment make a difference?
- Advanced understanding of a poorly understood condition: The first step to ending suffering for people experiencing misophonia (or any condition, for that matter) is to resolve why and how the disorder develops. Although the pace of scientific knowledge builds incrementally through rigorous and replicable research studies, scientists now know much more about the nature and features of misophonia than we did even five years ago.
Studies have shed light on the brain basis of misophonia and novel interventions driven by these findings have been tested. Factors that may predict the presence of misophonia or different features of the disorder have been identified and new open-access databases of tools allow researchers and clinicians to study and treat misophonia. This rapid progress has been galvanized if not directly supported by funding from the MRF.
- Convened funded investigators to build the field: Misophonia has been underfunded, therefore most scientific teams who conduct misophonia research are the only ones in their academic department or institution to focus on the disorder. This can limit the development of research networks that are critical to a field's success.
Now, the MRF convenes its network of funded investigators each year to share developments in their research, learn from each other about new methods or approaches to understanding and treating the disorder, build new collaborations, and collectively identify opportunities to further advance the field. Because these meetings also include young investigators – students, research assistants, and postdoctoral fellows – they have the dual purpose of both supporting the research and the scientists engaged in the community. Building capacity within the misophonia workforce has been a priority of the MRF since its inception, and this commitment to the next generation speaks to the power of philanthropy to advance a scientific field across many dimensions.
- Supported consensus-building to define and assess a medical disorder: The Milken Institute's 2018 analysis of barriers to progress showed that the lack of an accepted definition of misophonia hampered the field's ability to understand, assess, diagnose, or treat the disorder. Three years later, with support from the MRF, a committee of scientists and clinicians with expertise in misophonia and related conditions developed and published a peer-reviewed consensus definition of misophonia. It helps to validate the experience of people suffering from the disorder, it aligns the scientific community around common language and understanding, and it can be used to create and standardize questionnaires and other methods to identify, diagnose, and measure the severity of misophonia for clinical and research purposes. In another huge leap forward for the misophonia field, in 2022, the MRF supported two research teams who are exclusively focused on developing and validating misophonia measurement instruments to more reliably detect and measure the disorder.
The Misophonia Research Fund can serve as a case study for how philanthropy can catalyze a research field in which progress has lagged due to a lack of research funding and other support.
Looking ahead to the New Year, the outlook for the misophonia community is bright. More young scientists are engaged in the MRF community than ever before, public awareness about the disorder is growing thanks to media attention and new voices speaking out about their experience with the disorder, and the MRF is on track to provide research funding to a new cycle of investigators later in the year.
Most promising of all is the way medical philanthropists can learn from the example of the MRF and how strategic, intentional investment can advance understanding of poorly understood and underfunded conditions and offer hope for a healthier future for all.