Why do you think there needed to be a nonprofit for Misophonia?
Over the last decade, I’ve worked as an advocate for Misophonia by writing books, starting Misophonia International, and then creating coping skills classes with Dr. Jennifer Jo Brout. Through this time, I have always been dedicated to providing accurate information on Misophonia and helping people learn about the disorder. What I’ve realized over time is that research needs to continue and that there are many studies that have yet to be done on the disorder. My idea was that if I started a foundation, we could directly participate in this research by fundraising and then facilitating the studies. I feel like a dedicated nonprofit for Misophonia that focuses both on research and helping sufferers learn coping skills is a necessary step forward. If research is going to happen, there also should be feedback from those who require the research most—the people with Misophonia and their families.
What are the goals of the foundation?
The goals of the foundation are many, but primarily our goal is to facilitate research, provide grants, and start a research journal that focuses on Misophonia. We also plan to help facilitate treatments and surveys through academic research. We also plan to provide information resources for suffers, conferences for both the academic/clinical communities and sufferers of Misophonia, and provide education to the general public on the disorder. This is just some of what we have planned—and it’s our hope that as we grow, we’ll be able to focus on even more programs.
Are there other board members for this nonprofit, or is it just you?
This is absolutely not just me! We have a full board of directors, including Amber Liponoga, Vicki Sladowski, and Sharon Mousel. I am so grateful for their help founding this organization, and I will lean on their many skills and talents as we grow!
What have the challenges been starting the foundation?
The main challenge facing the foundation right now is funding and getting off the ground. As all organizations do, we’ll be facing tax filings, local laws that vary, and organizational struggles involving the practical setting up of the organization. Basically, it’s down to time and money.
Is this foundation located in The United States?
Yes, the foundation is located in Missouri. However, most of our operations are digital, and we plan to have a conference at some point which may not be in Missouri.
Where do you see the foundation in 10 years?
I’m hoping that in 10 years we will be up and going with a physical location for a lab. That’s so long from now… but this is the type of goal we have to go forward. We want to change the landscape of Misophonia research and participate for years to come.
What can people expect from the foundation in the next year?
In the upcoming months we plan a book on Misophonia research with professional opinions, and we’ll be immediately using any funds we get to go toward existing researchers. Hopefully in the next year we can also offer an academic grant to students with Misophonia.
How can readers support the foundation?
Readers who would like to support the foundation can donate directly or pay for a limited time lifetime membership. In the future, we will sell yearly memberships which give discounts to our conferences and products. Right now, you can pay for a lifetime membership that will offer these same discounts and never expire. We also are accepting pay-what-you-want donations.
We are not yet tax deductible but will be within the next few months. For now, we are using payments for startup costs and government filings.
Can readers outside of the USA donate or support the foundation?
Yes! We will be looking for volunteers in the future and also accept donations from anywhere in the world. Once we are tax deductible, however, only US residents will be able to claim donations on their taxes.