Overview

Situation

As many as one in five people report feelings of rage, disgust, fear, or anxiety when they hear certain sounds associated with chewing, sniffling, tapping, or clicking. However, some experience severe physical and/or emotional responses to these sounds, leaving them unable to spend time with family, maintain social relationships, or even go to school. The condition, known as misophonia, was named at the turn of this century. It is still not included in medical textbooks and is not yet recognized by insurance companies—meaning that care probably won't be reimbursed for those who can get help.

Following a family member’s struggle with misophonia, the founders of the REAM Foundation embarked on a journey to advance the science behind this under-recognized condition. They engaged the Center for Strategic Philanthropy’s (CSP) experts to determine how philanthropic capital can best support efforts to research, diagnose, and treat misophonia, and provide the information and awareness that could offer hope to individuals and families. The dedication of the funders and our strategic partnership over four years of engagement have propelled this nascent field.

Approach

In partnership with the REAM Foundation, CSP first worked to assess the landscape and uncovered a number of critical gaps. CSP’s analysis found a lack of scientific consensus around the very definition of the condition, a highly fragmented field, and a dearth of funding by the major funders of US research, including the National Institutes of Health.

The collective findings of this deep due diligence effort were published in a Giving Smarter Guide in 2019. This key resource identified a number of avenues where philanthropic capital could have an outsized impact on the field. These included investing and support for fundamental studies, developing of diagnostic tools, funding clinical trials, and supporting greater collaboration and interdisciplinary research, among others.

Outcomes and Next Steps

The publication of the Giving Smarter Guide was a critical starting point. Since publication, CSP has continued to work in close partnership with the REAM Foundation to advance the study of misophonia and drive progress in the field. Together, CSP and REAM have developed four major global funding announcements that fund work to characterize the condition, develop diagnostic tools, and fund clinical or model studies of specific interventions. Twenty investigators have already been funded to study a cross-section of key issues and potential new treatments.

In June 2020, the Milken Institute, with support from the REAM Foundation, hosted the first meeting of Misophonia Research Fund investigators. This convening brought together more than 20 scientists to present their research plans and identify opportunities for future collaboration. In April 2021, after a thorough research process, a team of investigators came together to publish a consensus definition of misophonia. The next step is an additional call for proposals for the scientific community to continue to characterize the condition and to advance to clinical stages of research.

CSP and REAM Foundation’s partnership, and the major strides that have happened are the results of an ongoing commitment to unify the research field and eventually lead to a better future for those who live with misophonia.