Giving Compass’ Take:
• In this Giving Smarter Guide, the Milken Institute breaks down opportunities for philanthropists to make an impact for individuals suffering from misophonia.
• Which of these areas of opportunity best align with your mission and resources? What organizations are already engaged in the area you are interested in?
What Is Misophonia?
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. While scientific research in this field is nascent, several studies have shown that misophonia is real, can cause extreme distress, and is correlated with key differences in brain activity.
The State of the Field:
Researchers have shown that individuals with misophonia respond to trigger sounds differently than the general population; however, many questions remain. For example, it is not known how misophonia develops, or what the prognosis is once a person experiences misophonia. 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. Research in the field is fragmented and highly siloed, with individual groups studying specific facets of the condition, such as neural responses, and minimal collaboration among disciplines.
Philanthropic Opportunities to Accelerate Misophonia Research:
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. These principles are extremely important for a young field like misophonia, which has been fragmented among medical specialties. Donors’ early funding of research will help lay the foundation of the field.
The Milken Institute’s Center for Strategic Philanthropy (CSP) was engaged by The REAM Foundation to determine how philanthropic capital can best support efforts to research, diagnose, and treat misophonia. Below are the six primary philanthropic opportunities that CSP identified.
- Support descriptive studies of misophonia.
- Focus on developing diagnostic tools.
- Improve studies of prevalence and impact.
- Fund robust clinical trials.
- Build a rigorous knowledge base.
- Bring the field together.
Several research studies have found that as many as one in five people report strong feelings of disgust, rage, or anxiety in response to very specific sounds such as other people chewing or tapping. However, a subset of these individuals experience responses so great that they are unable to participate in key activities like spending time with their family, attending school, or maintaining social relationships. When these individuals seek medical help, they are often met with confusion, skepticism, and minimal support. These individuals are suffering from a condition known as misophonia; however, misophonia cannot be found in medical textbooks, is predominantly unknown to clinicians, and is not yet recognized by insurance companies.