EPILEPSY AWARENESS MONTH

Focusing on care, advocacy, research and education

to prevent epilepsy, seizures, bullying, ignorance, 

injury, barriers, burdens, and early death!

One million Americans like myself are still praying for a cure that may never be found. Hope as well as strength is our best chance of surviving from this epidemic. This is a fact for all epileptics to keep up the good fight and to knock out all of the badness trying to hurt us, and hurting us is working to a degree, but, I am still here as many of you are and I plan on it for a long time, God willing. I fall, but I get right back up and back to work. I’ve been injured so many times in so many different ways, but death has not taken me away yet nor do I want it too till we find a cure!

We have good weeks, we have bad ones. I myself am still waiting for that good month to occur as well as back to back weeks, therefore two good weeks over my 26 years have yet to come.

This walk for Epilepsy I would love to do, but, I am here in New York and that walk is in Pasadena, California on Sunday, November 22nd during the Rose Bowl which I could care less about other then these here epileptics of course. A Walk + Run to End Epilepsy, if it only was that simple yet a $500,000.00 fundraising goal can be made. I only wish that there were more individuals like myself, which there are, to share their stories too and possibly more people will care to help because you will never here a thing on the radio or television about it.

As much as this month they say is for Epileptics you will never see an athlete wear a purple ribbon promoting it like they do for breast cancer patients on their sneaker, sock, wrist, chest or collar and there are and have been forever way before cancer started epileptic victims have been dying and it bothers me so. I know that everyone has a mother or family member with cancer and for that I am sorry but, every family has a member as well or few with Epilepsy or Seizures and if not well then you have a very lucky family. 

Advocating for Change that Improves Lives!

  The Challenge:

• No voice for people with epilepsy

• Need statewide advocacy

• Support passage of bill so students with epilepsy can have access to seizure rescue medications in school, and we continue to support implementation with educational material

• Host Epilepsy Awareness Day and educate legislators about epilepsy

• Send delegation to D.C. for Epilepsy Public Policy Institute / Advocate for more funding for epilepsy research and programs

• Ongoing legislative advocacy to protect rights and live
  
  FINALLY -  we need to spread the word to Fight Against Epilepsy and...
  
  FIND A CURE! 

When ALL that Epilepsy Started

 

For the first 9 years of my education I attended Our Lady of the Blessed Sacrament (OLBS) in Bayside, NY. This is a Roman Catholic School and church in my neighborhood. It was the 5th grade in 1990 that I had my first major seizure. I was in the computer room a few days before Christmas break when I frightened my teacher and classmates by falling backwards off my chair. I woke up in a hospital gown at North Shore (now LIJ) in Long Island and wondered what was wrong with me. From that point on, life has gotten more complicated and my health has yet to improve.

After OLBS, I chose to attend Holy Cross High School,  two blocks from my parent’s house. It was my first and second choices to go here. After I started, my 3 brothers followed each 2 years apart. After graduating, I went to St. Johns University (SJU) in Jamaica, Queens for two years finishing all of my core liberal arts classes, but did not find any major interesting. So I transferred to New York Institute of Technology (NYIT), the number one school in NY for Architecture! The reason for this choice was that if my father wouldn’t let me work with him in his business (wanted us all to get full educations) I went for the next best thing and found it very interesting and right up my alley. I enjoyed drawing and project building. This was a five year course and I did well, but I was up till 4a.m. drawing layouts and projects and my parents hated the lack of sleep that was taking a toll on me. Although I loved it, my parents were happy to see my neurologist pull me out after the first year. I hated that I couldn't attend and tried everything to get back into the program. After my first year working at the New York City Council of Carpenters (NYCCC) in NYC, I chose to go to night classes at NYIT in midtown Manhattan, but after the first semester I was pulled out AGAIN by my neurologist.

By this time I was very heart broken and decided to give up until I had another idea a few years later. I was accepted into Queens College majoring in Sports Nutrition, something I thought that I’d be good in because I was already athletic and at the time healthier. Unfortunately, I found it to be a bit too complicated for me. In 2014 Michelle and I tried once more at St. John’s University, I was accepted again with only a few classes left to take in Photography, but my major problem was that SJU was too expensive and if you are only taking one or two classes per semester rather than a full time schedule, you get no help from financial aid. 

My wife Michelle is a marketing professional for many Non-Profit and For-Profit’s she has worked for. She put herself through college at SJU with a Masters in Marketing Management and one day she will have a doctorate as well. If I had known her at the time, she would have helped me through whatever I needed done, but I was not catching her eye in the crowd as much back then. I would have truly appreciated that, but 17 years later since 1998 isn’t anyone’s fault. Who could predict their future in HS like they ask you? 21 years later from that question and my life is still in a backwards motion. Yes my answer was when I get older I want to be married with my own house, but still I find myself stuck on my parents couch as a child with disabilities galore.