The Problem with Epilepsy

My daughter started having seizures at the age of two. My wife and I were told by her doctor to contact the Epilepsy Foundation of Los Angeles if we had any questions.

Most people are not aware that there are several Epilepsy Foundations. Some are bigger than others. Each state has at least one Epilepsy Foundation with dozens of smaller charities in several cities. The Epilepsy Foundation of America and the Epilepsy Foundation of Los Angeles is not the same foundation. We were referred to the Los Angeles Chapter because it was closer to our home in Los Angeles.

We needed an Epilepsy advocate when my daughter’s school refused to carry her seizure rescue medication on campus. The Epilepsy Foundation of Los Angeles declined to help us.

A year later, I contacted the Epilepsy Foundation of Los Angeles to ask if they could train teachers at my daughter’s school about Epilepsy. I was desperate and didn’t know any other resources. They declined to help again.

I contacted them again to see if they would email Youtube.com to take down their fake seizure videos. My daughter was being teased at school because the other kids were watching the fake seizure videos. The Epilepsy Foundation refused to help.

I reached out to them again when my daughter was kicked off her swim team for having Epilepsy. I was hoping the Epilepsy Foundation of Los Angeles would have some advice on who to contact but, they didn’t.

In 2018, I drafted a California law that teachers should be trained for seizures. The state of California has the most adults with Epilepsy (400,000) and children (59,000). The Epilepsy Foundation of Los Angeles did more to discourage me from continuing with the law than helping. My wife and I spoke at Children’s Hospital Los Angeles about the success of VNS Therapy for my daughter. The End Epilepsy organization invited us to a Gala held every year in Beverly Hills. The day before the Gala, we were contacted by the Epilepsy Foundation of Los Angeles. They demanded $500 or we could not attend the Gala.

That same year we attended the Epilepsy Pipeline Conference in San Fransico. We were approached by the Epilepsy Foundation of America, located in Maryland. They are the largest Epilepsy Foundation in the country. The Epilepsy Foundation of America was interested in doing a story about my daughter’s success with VNS Therapy. We flew to Washington DC for the annual Epilepsy Walk the next month and met with the Epilepsy Foundation of America Marketing team. They said to call them the following Monday when I got back to Los Angeles. Our conversation was brief and soul-crushing.

“Who are you?” the woman from the Marketing team asked.

“I’m Mike Knox. You wanted to do a story on my daughter.”

“Well, no one is going to care about your story because you’re not famous.”

I would have been more shocked except that I grew up in Los Angeles and was used to narcissists.

The Epilepsy Foundation of America has a large social media presence and huge celebrity endorsements. The Epilepsy Foundation of Los Angeles has neither. The East coast Epilespy foundations do not communicate with the West coast foundations. It appears that the Epilepsy Foundation of Los Angeles is okay with being in the last place.

The problem with Epilepsy is that our community is divided. The Epilepsy Foundations are not in the business of advocating; they are in the business of fundraising.

As Ann Rand used to say, “The hardest thing to explain is the glaringly evident which everybody has decided not to see.

© 2020 Mike Knox All Rights Reserved