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Donations are still being accepted for
Sara's 5th Annual Walk and 5K Sprint
Sara’s Walk for Epilepsy also does many other things besides raising funds for better services and support. It also promoted general awareness, educated people, and per my personal mission, it helps break the stigma that surrounds epilepsy. My website "It's Not who I Am" promotes the idea and belief that I will not let my epilepsy define me as a person. I ask that no one judge a person wrongly because they have epilepsy or anything else that makes them different. What a boring world it would be if we were all the same!
Hi, my name is Sara-Elizabeth, but most people just call me Sara. I am 15 years old and I have epilepsy. Please, take your time looking around my website, and let me know what you think, and please stop back often. We are always changing and/or adding something. Within my website you can read about my advocacy work in Washington D.C., My Book, Sara’s Annual Walk for Epilepsy, and so much more!
I was diagnosed with Idiopathic Benign Childhood Epilepsy at 16 months old. While I am currently seizure free, I do still have residual side effects from my seizure disorder, and I am still under the care of a Neurologist. I experienced both Tonic-Clonic and Partial Complex Seizures. Because of my seizures I did spend extended periods of time in hospitals. I was on adult doses of anticonvulsant medications just to keep my seizures under control.
I don't remember how others treated me because of my seizures when I was younger, but I have been told that some people looked at me with pity in their eyes, while others looked at me with disgust. I have also been told about the difficult times I had when my parents tried to set up play dates with my friends. Some families did not want me to come to play at their homes because they were afraid I would have a seizure and they would not know what to do. These are just two of the things that caused personal stigma in my life. I know that others with epilepsy have experienced their own stigmas when it comes to their own personal experiences with their own epilepsy. I am hoping that with my outreach to educate others about epilepsy, it will have an affect on how I and others are treated that have epilepsy. This is a journey I share with millions of other people with epilepsy.
At the age of 10 I started educating others. I told them that just because I have epilepsy I am no different then they are. I told everyone that I had epilepsy and if they had questions I would answered them. If they did not have questions I offered information. Most people were receptive, some people were not.
Around the same time I decided to put together what has become “Sara’s Annual Walk for Epilepsy” in my hometown of New Paltz, New York. I worked with local agencies that served individuals with epilepsy and the State University of New York at New Paltz (SUNY) to organize and promote my walks. To date, I have held five walks and collectively they have raised approximately $60,000.00. All monies raised went to support those with epilepsy and for my last three walks, 100% of the monies raised (approximately $30,000.00) went to the Epilepsy Foundation of Northeastern New York. My next walk will be Spring 2011!
In addition to my walks I have participated in regional print and television ads (You can see the TV commercial on MY ACTING page), held a breakfast, held two races, been on local and national radio programs, visited Washington D.C. on two occasions to meet with my representatives, and spoke to children from all around the country, all of this was to encourage others to talk about epilepsy, raise awareness and break the stigmas that surround it.
Because of my hard work, I was contacted by a local author, Chris Passudetti, who was working with a publisher, Scobre Press. Together they wanted to write my story. I was more then excited to work with them on this project. It took two years and lots of work but the story “Being Sara” is now available! It is my hopes that my story will inspire others to talk about epilepsy and how it affects their life and inspire others to reach out and make a difference in their own communities. The Author of “Being Sara”, Chris Passudetti once told me that, “growing up is difficult but if you see your difficulties as opportunities rather than burdens, there is no limit to the positive impact you can have on your community, no matter how old you are”. It is my hopes that everyone that reads “Being Sara” come away with this message.
I receive emails from different people around the world and I do answer each and every one personally. So feel free to drop me a note and I will get back to you!
Sara-Elizabeth
Sara's Appearance on Disability Matters Sara's Appearance on Disability Matters
December 30, 2008 January 13, 2009
In Memory of My Friend Sen. Hillary Rodham Clinton, Sara-Elizabeth and Kymmie
Kyle Meek Read about my visit with President and Senator
1994 - 2008 Clinton and much more in my August 31, 2008
E-Newsletter by clicking the E-newsletter link above.
Robert Mooney Photograph or Robert Mooney's Blog
CONTACT INFORMATION:
Have a question for Sara-Elizabeth or want to share a "This IS who I am" story, you can email Sara-Elizabeth by clicking here or sara-elizabeth@itsnotwhoiam.com.
Have a question, concern or constructive criticism about this website, you can email the webmaster (aka dad) by clicking here or webmaster@itsnotwhoiam.com.
Want to ask my mom a question about what it was like to raise a child with epilepsy or any other questions, you can email her by clicking here or mom@itsnotwhoiam.com.
Want to be added to my mailing list? clicking here or webmaster@itsnotwhoiam.com.
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