Board of Directors
Robert A. Fiore
Robert Fiore is the President and Founder. He has had epilepsy since birth, but it was discovered when he was nine months old. In December 2005, he was scheduled to have temporal lobectomy surgery to correct his epilepsy and he told the doctor: "When I recover I will do everything possible to push and promote epilepsy." The look on the doctor's face was friendly but he did not look convinced. Unfortunately, they had to reschedule.
The surgery took place Tuesday, January 17, 2006 and upon recovering, he became an advocate for epilepsy. Many people watched what he did, and he came to a turning point in his life in the summer of 2009 and was told: "Why don't you start your own organization?" Robert spoke with others and they agreed and supported that suggestion.
Our website was launched November 11, 2009 and is formatted to help people with information in many forms as well as making people aware about epilepsy in many ways. Both it and our organization have grown. We truly hope you will follow us as we make...progress through awareness.
Leng-Chye Fiore is the secretary and treasurer. She lives in Milford, Connecticut and became involved with the cause, because of her husband who has epilepsy .
Ann Marie Bezuyen
Ms. Bezuyen is the Vice-President. She received her degree in education from William Paterson University and has been an epilepsy advocate and educator since 1995. She is passionate about eliminating stigma through educational awareness programs and to that end, she has coordinated and presented Epilepsy training both nationally and internationally. She works daily with persons with Epilepsy and their families on an individual basis, and with The Anita Kaufmann Foundation, established their Heads Up for Vets Programs. Ms. Bezuyen is an invited local radio and public television guest, as well as the author of research papers and magazine and newspaper articles.
The Connecticut Epilepsy Advocate Foundation has five Board Members and an Ambassador. Each is listed below.
Jim Speiser is the Vice-President, his many other career paths have included the hospitality industry, insurance consulting, book editor, and science journalist. Jim and Bob have been friends for over forty-seven years, and he has been a special advisor for the Connecticut Epilepsy Advocate Foundation since 2016. He lives in Arizona with his wife of thirty-plus years.
Kimberly Bari is the Connecticut Epilepsy Advocate Foundation's Ambassador. Here is her bio: I am a very lucky epilepsy and autoimmune encephalitis survivor who has undergone two brain resection surgeries along with an RNS System implant. With a team of caring doctors and a skull full of technology, I'm no longer dealing with epilepsy alone. I'm beyond thankful to say that the number of seizures, in addition to their length and strength, have all significantly decreased. This has allowed me to regain my sense of comfort and control and, with that said, it's my turn to pay it forward. To my fellow patients, never give up and be open to learning. It’s important to discuss possible treatment options with your healthcare provider, and please remember that you are not alone.
To learn a bit more about my case, you can watch the following TV segment entitled “Rebooting Kimberly’s Brain” which is posted on YouTube.
Charlie Pagano had worked with the Connecticut Epilepsy Advocate Foundation since its inception and was our Vice-President since 2016, and we thank him for his unconditional dedication and support. Charles N. Pagano, August 13, 1947 ~ June 8, 2022 (age 74)
Amber has been a close friend and supporter of Robert for nine years. While in the Legal field, she woke up in a hospital one day in 2012 after her first Grand Mal. She was diagnosed with Epilepsy and has now been fighting it for 9 years, including several medications and brain surgery in 2018. She met Robert in 2014 and he has supported and assisted her in unbelievable ways. She considers him her second father. She is very dedicated to helping Robert and his amazing Foundation.