Misophonia - A Giving Smarter Guide

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Misophonia is a condition in which specific sensory sensations, such as a particular sound, lead to a strong physical and emotional response. The stimuli causing the response are often referred to as “triggers.” Common triggers include the sound of people eating, nasal noises like sniffling, and sounds associated with fidgeting like clicking a pen. Exposure to triggers causes the misophonia sufferer to experience a stereotyped physical and emotional response, which includes an increased heart rate, sweating, and activation of stress or anger response. People describe feeling intense anxiety, rage, fear, or the desire to flee. 

Research and scientific understanding of misophonia is limited as the condition is solely studied by individual groups focusing on specific facets, such as neural responses, and minimal collaboration among disciplines. There are no objective measures to determine if a person experiences misophonia and no scientifically vetted therapeutic strategies once a diagnosis is made. Beyond the scientific questions, many clinicians and researchers are not aware of misophonia and therefore unable to help patients. Additionally, clinicians who do advise patients suffering from misophonia report not being able to bill insurers for misophonia consultations. Overall, these gaps leave misophonia patients unable to navigate information, find clinicians, or identify potential therapeutic strategies. 

Philanthropic capital can play a pivotal role in biomedical research, especially in emerging scientific disciplines, as donors’ funding can support pilot studies needed to develop an evidence base that will attract additional research grants from larger grant programs. Smart philanthropic programs can accelerate progress by promoting interdisciplinary collaboration and principles of open science. Through this Center of Strategic Philanthropy's "Giving Smarter Guide," we hope to encourage philanthropic funding that will target research programs that cross multiple disciplines, require data sharing or collaboration, or ask funded researchers to contribute to the field through mentorship or other activities. 

We have identified specific areas where carefully targeted funding, particularly philanthropic capital, could have an outsized impact on the field. To further this effort, The REAM Foundation has partnered with the Milken Institute Center for Strategic Philanthropy to hold the first open grant program focused on misophonia. Proposals will be accepted through April 12, 2019. To learn more about this opportunity, please download the RFP or reach out to our team at misophonia@milkeninstitute.org.

Published January 15, 2019