Why I Created The Defeating Epilepsy Foundation
My name is Natalie Boehm, and I am the President and Founder of The Defeating Epilepsy Foundation. Our mission is to provide the advocacy and educational resources needed to the epilepsy community and our society. My goal as the founder is to educate and create resources to help create better economic and educational opportunities for people with epilepsy and help to improve their quality of life.
My journey with epilepsy began at the age of two when I sustained a traumatic brain injury. Over the next twenty-four years, my life was a struggle being put on barbiturates and anticonvulsants to control my seizures. Being on powerful medication, dealing with negative side effects, and a lack of understanding of what I was dealing with prevented me from having a healthy childhood. Once my seizures were finally controlled with the right combination of medications, I realized having my seizures under control was only the first step; there was so much more I had to do in order to have a good quality of life.
I made up my mind as an adult that I was not going to go on disability, and I was not going to live in a group home. I was going to live my life to the fullest and accomplish as much as I could in my life. I completed my undergraduate work and found gainful employment. Despite my accomplishments, I was extremely anxious. All I could think of is if someone finds out I have epilepsy how will I support myself? Having to hide my challenges was very frustrating. To have an invisible illness, yet to be trying to function as an able-bodied citizen was a challenge. It was then I realized that taking my medication was only one piece of the puzzle. Exercise, eating right, stress relief, and maintaining good mental health was going to be a necessity if I was going to overcome epilepsy and be a productive person in society.
I have been very blessed over these years. I married my best friend Tobias, and we have two sons Edward and Anthony. I am able to drive and can enjoy many privileges that many with epilepsy are not able to do. Despite my accomplishments, there is still such a lack of knowledge about epilepsy that I still face discrimination, especially in education and the workforce. I decided that due to the larger organizations focusing on finding a cure and not helping those with epilepsy have a good quality of life, I was going to create an organization that would do just that.
After finishing my master’s in business administration in 2020, I launched The Defeating Epilepsy Foundation. In the first two years due to covid, I focused a great deal, putting together educational information through our blog and YouTube channel. I found as I was researching epilepsy, that I really didn’t understand what I had been dealing with most of my life, how much educational information was kept from me. It was clear that not only was society not familiar with epilepsy, but many people battling epilepsy themselves were lacking important information about their condition. My team and I are determined to make changes and help those who are battling epilepsy have access to the information they truly deserve and to find some peace in what they are dealing with.
Along with educational information, in the past two years we have had the honor of awarding four scholarships to college students battling epilepsy. We are in the process of creating a workforce development program to help individuals with neurological and neurodivergent conditions gain access to a career coach and resources to help them prepare for gainful employment. We are just at the very beginning of our journey and are collaborating with individuals and organizations to do even more.
Please feel free to email me at [email protected] with any questions you have regarding our work or my experiences in battling epilepsy. We invite you to become a part of our journey in choosing our organization as your charity of choice. Thank you for your support and together we will defeat epilepsy.