Misophonia does not research itself, and research isn’t free.
Every day we talk about Misophonia Research here. That’s not an understatement, either. Long conversations happen about the programs at NYU, Duke, and the SPD foundation. Unfortunately, a lot of them concern the future of these programs. How will they keep going in a year’s time, when the well runs dry? That’s the thing — they won’t. As a sufferer of Misophonia, and an advocate this truly scares me. The NIMH and the healthcare system are having trouble providing funding the disorders in the spotlight. So, Misophonia, a practically non-existent condition in the health sphere, will get no funding, and it aside from some “bad press”, we may sink back into the abyss.
I don’t mean to give you a story of doom and gloom. In the past year a lot of good stuff has happened. Just check out the LeDoux Lab and the great research at NYU. Then, we have the amazing program at Duke University! But, these programs can only exist so long as they’re receiving funding and donations. Research is expensive. Labs need new equipment. They need to pay their staff. They need to ensure that their department is able to support the development of the study. This is the reality of the situation. There is no research if there are no people willing to back the research. The most important advocate for the discovery of Misophonia is you.
The National Institute of Health (NIH) and its sub-division, the National Institute of Mental Health, NIMH) is our largest granting organization for funding research for disorders such as misophonia. However, the NIMH lacks financial resources, and Misophonia is not even on the medical radar. So, we have to turn misfortune into opportunity.
How? For the first time we can choose our own researchers and we can have relationships with them. In the past researchers have been bound by the decisions of these government agencies and unless private funding was available were mostly only able to study disorders that were in the accepted diagnostic manuals (currently, the DSM-5 and ICD-10). Not anymore. Yes, those were our tax dollars at work, but how much say did you have in what was being researched, or how it was being researched? I have always had a unique place right at the junction of this system, as a sufferer, parent, psychologist, fund-raiser, and donor. However, we need for all of us to do what we can, no matter how small or how large.
Together we can support this network of excellent researchers and add to the network. We can also make sure that the researchers we work with are studying what is important to us: the sufferers. The IMNR does not personally accept donations. We are Misophonia sufferers and families of sufferers who help researchers we believe in raise money for research that we believe in. We only work with researchers we trust, who take us seriously and who care about us as individuals.
To donate to Duke University’s Misophonia Program