What is the Every-Man? Does the Every-Man work eight to five, make car payments, be the stay at home parent, work odd hours, or go to school? The Every-Man is as hard to determine, maybe as hard as it is to define normal. Are you an Every-Man? How about the people you connect and interact with? Are they? I have always thought I was an Every-Man -- just a normal person with normal friends and a normal family. Recently the idea that I was an Every-Man was brought into question. My world was altered. My emotions and perception were as well.
I came to a point in my life where I was learning and networking in the social media world with a close friend. He taught me about epilepsy, and it began to resonate with me. The lack of awareness and the stigma around epilepsy are wrong. I wanted to help.
I began blogging for TalkAboutIt.org to grow awareness for epilepsy. My first blog about the merger of the Epilepsy Foundation and the Epilepsy Therapy Project got a lot of attention from friends on Twitter and Facebook. This blog was seen by one of my friends who I have known since middle school. She contacted me to say she lives with epilepsy. For all these years I had no idea. My Every-Man view of myself vanished.
Soon after, we met for dinner and she told me her story. When her seizures first started happening her family was confused, unsure, and frustrated by her epilepsy. Some members of her family would even get upset at her; they just didn’t understand. Her friends, also lacking understanding, would leave her behind if she was feeling pain or having trouble with her epilepsy. She told me at one point when things got really bad she was in and out of the hospital, her boyfriend of four years left her all because he didn’t understand. This lack of understanding by those around her made her life difficult. It made me realize how important it is for people to be aware and to understand epilepsy.
We talked about how many other people live with epilepsy -- a community out there for her to build connections. She was amazed to find out just how many people live with epilepsy, especially that there are 32,000 in Orange County alone. She said her doctor had always told her that other people live with epilepsy -- but never how many and how geographically close to her. I asked her if her doctor has ever told her about TalkAboutIt.org, the Epilepsy Foundation or the Epilepsy Therapy Project. She said no. I wondered what doctors are talking about to people who live with epilepsy. Do the doctors know about all treatment options? Do they know about these organizations?
After meeting my friend and hearing her story, I became more and more frustrated with the lack of awareness and the stigma that surrounds epilepsy. I decided then that epilepsy awareness was not going to be the smaller battle I envisioned when I started this blog. I have decided to declare war on the stigma and spread awareness wherever I go. I look forward to starting my war on the stigma this November for National Epilepsy Awareness Month.
We must do this together -- for my friend, for any of your friends who still may be afraid to talk about their epilepsy, for the millions of Americans who live with epilepsy every day. Join me. Join the fight. Stay tuned and remember to talk about it!
Monday, October 8, 2012
Newport Beach CA, October 6, 2012 – On a small street, there is a beautiful gallery showing the work of Susan Nelson. She opened up her doors for the first Epilepsy Therapy Project event in Orange County, to display art created by people living with epilepsy. The artists donated their work, which was available to attendees for a donation. Julie Thompson-Dobkin, the host for the evening, gave a presentation talking to the crowded gallery about the story behind the art and the different artists.
Julie brought up several statistics about epilepsy and discussed the work the Epilepsy Therapy Project has been doing. She said that 65 million people in the world live with epilepsy, over 2.2 million in America, with 32,000 of them living in Orange County alone. She commented this number would only increase as more soldiers come home with traumatic brain injuries. Individuals living with epilepsy are affected by more than just seizures; they face challenges in school, employment, and social events.
Epilepsy is one of the most under recognized and underfunded of neurological disorders, especially when you consider the number of people living with epilepsy, is higher than those who suffer from autism, Parkinson’s disease, multiple sclerosis and cerebral palsy combined.
I had the opportunity to speak with Sara and her husband Steven, from Mission Viejo, CA. Steven explained to me about a friend he had in high school who lives with epilepsy and had a seizure in class. “I was first to him, because I knew what was happening right away.” It was his first encounter with epilepsy. He had always known about it, but never knew how widespread it is. “I have to, honestly, admit that I was not aware of some of the statistics I was reading,” said Sara, Steven’s wife, when she was speaking about the information on the invitation that stated: Approximately one in 26 individuals will develop epilepsy at some point in their lives.
As the evening progressed Julie talked about the art and their creators. She spoke about, her son, who lives with epilepsy, and he has been her biggest inspiration. As a neurologist and self-taught artist, Julie started researching creativity in the brain. She focused on the isolation and localization of creativity. Her path led her to the Epilepsy Therapy Project and a lecture by Dr. Steven Schachter, of Harvard Medical School about artists who live with epilepsy. Her excitement for his research and the help from the Epilepsy Therapy Project led her to this evening, to support her family, and raise awareness for epilepsy. ”Art became a means of therapy,” Julie said. “It allows them [people with epilepsy] to finally communicate and express themselves in ways they couldn't before”
The Epilepsy Therapy Project was founded by a small group of mothers, fathers and children who were unsatisfied with the status quo. Their strategic approach has led to an acceleration of new therapies from the laboratory to the patient. ETP provides grants and investments to the most promising ideas in the early stages of development, where funding is grossly lacking. In over 13 of 20 funded studies, the seed money provided by ETP has led to further investments that have progressed to advanced stages of development, as well as actual therapies.
As the night came to a close, you could hear the excitement for the art but also a deep appreciation for Julie. Her energy and motivation is truly inspiring. There was also positive talk of the just announced merger between the Epilepsy Therapy Project and the Epilepsy Foundation and all the great new treatment and awareness efforts this will bring to the community.
I would like to thank Julie Thompson-Dobkins, The Epilepsy Therapy Project, Thompson Cellars and Susan Nelson for opening her gallery up to us for the night. I was thrilled to be there and left excited for all the great things to come.
Friday, October 5, 2012
October 4th 2012 -- the Epilepsy Foundation announced a plan to merge with the Epilepsy Therapy Project. This is a big step for both of the organizations to help expand and grow together instead of competing against each other.
The Epilepsy Therapy Project has been a major player in the development of therapies for those who live with epilepsy. The Epilepsy Therapy Project has developed the furthest reaching web site, epilepsy.com, for professionals and consumers. “As one foundation, we have the opportunity to build an exceptional and highly focused organization ‐ with the capability and expertise to make enormous strides in education, funding and the acceleration of new therapies.” Said Brien Smith, M.D., Chairman, Epilepsy Foundation.
I had the opportunity to talk with Kenneth Lowenberg, Senior Director of Communications, Epilepsy Foundation. His excitement about the merge was quiet obvious. He told me that raising the awareness of epilepsy is one of their main goals. He spoke about the report released by the Institute of Medicine this year showing the 1 in every 26 Americans will develop epilepsy in their life. “That number is actually likely to get higher as more and more of our returning war heroes are coming home with traumatic brain injuries. These types of injuries have a high chance of causing epilepsy within a few years of their occurrence. So clearly, we are focused on that and working closely with the Veterans Administration Medical Centers to make sure early detection and risk factors are evaluated.” Kenneth said.
Along with awareness to the public about epilepsy the Foundation will be focusing on the need for more governmental, industry and philanthropic dollars toward improving and accelerating new therapies and treatments for people with epilepsy.
Epilepsy affects over 2 million Americans and this year another 200,000 individuals in the U.S. will be diagnosed with epilepsy. About one-third of the individuals will continue to have seizures even though there are treatments available. The Epilepsy Foundation and the Epilepsy Therapy Project coming together will be a big, positive, step for epilepsy. Epilepsy is the most misunderstood and dramatically under-supported condition -- to improve research and public consciousness will help to end discrimination and isolation of people living with epilepsy