Shedding Light on a Mysterious Condition

abstract

CASE STUDY

Shedding Light on a Mysterious Condition

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 for those who can get help, care probably won’t be reimbursed. 

Following their daughter’s struggle with misophonia, Steve and Diane Miller, 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. 

Approach

In partnership with the REAM Foundation, CSP assessed the nascent field of misophonia and uncovered a number of critical gaps. CSP’s landscape 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 “Misophonia: A Center for Strategic Philanthropy Giving Smarter Guide” in 2019. This key resource identified several avenues where philanthropic capital could have an outsized impact on the field. These included investment and support for fundamental studies, development of diagnostic tools, funding of clinical trials, and supporting greater collaboration and interdisciplinary research, among others.

Outcomes and Next Steps

Following the publication of the Giving Smarter Guide, CSP has continued to work in close partnership with the REAM Foundation to advance the study of misophonia. Together, CSP and REAM created a global funding announcement focused on misophonia to characterize the condition, develop diagnostic tools, and fund clinical or model studies of specific interventions. Six investigators have already been funded to study a cross-section of key issues and potential new treatments. 

A major step to address the fragmented nature of the field is also underway. In June 2020, the Milken Institute, with support from the REAM Foundation, will host the first meeting of Misophonia Research Fund investigators. This convening will bring together more than 20 scientists to present their research plans and identify opportunities for future collaboration. These are significant steps in the effort to unify the research field and eventually lead to a better future for those who live with misophonia.

Published August 27, 2020